key: cord-0272435-2avq0b9v authors: Versalovic, E.; Klein, E.; Goering, S.; Ngo, Q.; Gliske, K.; Boulicault, M.; Specker Sullivan, L.; Thomas, M. J.; Widge, A. title: DBS for substance use disorders? An exploratory qualitative study of perspectives of people currently in treatment date: 2022-04-25 journal: nan DOI: 10.1101/2022.04.21.22273594 sha: 87a9df263bfd99a97cac2683db19ac1e2dcecd62 doc_id: 272435 cord_uid: 2avq0b9v Background and Aims: Deep brain stimulation (DBS) has shown promise as a treatment option for substance use disorders (SUDs), but may have unique ethical risks due to stigma and other factors. Previous studies have elicited researcher and clinician opinions on those risks, but none have studied perspectives of people living with SUDs. Methods: Participants were recruited through a national inpatient treatment network employing purposive sampling for representation of minoritized groups and diversity of substances. Participants viewed a short video introducing DBS, followed by a 1.5 hour semi-structured interview on their experiences with SUDs and their perspectives on DBS as a future treatment option. Interviews were analyzed by multiple coders who iteratively identified salient themes. Results: We interviewed 20 people in 12-step based, inpatient treatment programs (10 [50%] white/Caucasian, 7 Black/African American [35%], 2 Asian [10%], 1 Hispanic/Latino [5%], and 1 [5%] Alaska Native/American Indian; 11 [45%] women). Interviewees described a variety of barriers they currently faced through the course of their disease that mirrored barriers often associated with DBS (stigma, invasiveness, maintenance burdens, privacy risks). The majority of respondents expressed interest in DBS as a future treatment option, emphasizing the importance of exploring novel treatment options and keeping individual treatment goals as key guiding considerations. Conclusions: The perspectives of people with lived experience of SUDs contrasted with previous surveys of provider attitudes on DBS for SUDs. Individuals with SUDs gave relatively less weight to surgical risks and clinical burdens associated with DBS. These differences derived largely from their experiences living with an often-fatal disease, encountering limitations of current treatment options, and their familiarity with 12-step treatment paradigms that prioritize having multiple therapeutic tools. These findings support the study of DBS as a treatment option for SUDs, with extensive input from people with SUDs and advocates. 2018). Participants were recruited through the [anonymized for review] treatment system in California and Minnesota. The study was reviewed by the [anonymized for review] (STUDY00009975) and [anonymized for review]. Participants were initially asked about their personal experiences with addiction and treatment. They were then shown a five-minute video introducing deep brain stimulation (DBS) and its potential as a treatment for substance use disorders (see supplemental materials). The interview guide (see supplemental materials) was structured around common ethical and social concerns that have arisen in the application of DBS to mental health disorders to explore their saliency within this particular potential user population. These themes included agency (ex: how could you imagine a DBS enhancing or undermining a user's sense of agency?), social relationships (ex: would you involve loved ones in the process of getting a DBS?), stigma (ex: how could possible stigma of a neural device interact with stigma surrounding SUDs?), privacy (ex: who should have access to neural data?), and interactions with the healthcare system (ex: what kind of support is needed for follow-up appointments?). At the end of the interview, participants were asked if DBS would be something they personally might consider if it became available, who they identified as the most appropriate target users, the value of gathering end-or target-user perspectives, and whether they wished to add to or amend any of their responses. Interviews were conducted and recorded through HIPAA-compliant Zoom by EK and EV and lasted 1.5 hours on average. Demographic surveys were administered online after the interview. Participants were compensated $25 through a gift card. Interviews were transcribed using an online transcription service, and anonymized and cleaned by EV. SG, EK, and EV read the interviews and conducted thematic content analysis. The first 12 transcripts were each independently, inductively coded on atlas.ti, followed by extensive discussions to reconcile code differences to arrive at the final coding scheme. The final 8 were primarily coded by EV, and reviewed by EK and SG to check for discrepancies. To ensure continued sensitivity to the lived experience of SUDs and the treatment process, we used a team-based approach (Giesen and Roeser 2020) with monthly meetings of the full authorial team, including our SUDs subject matter experts, to check in, discuss any difficulties, and make collaborative decisions about the research process (e.g., timeline, determining coding schemes, broadening recruitment, etc.). Data were collected from September 2020 to May 2021 and analyzed from May 2021 to December 2021. Methods reported here are in line with the COREQ (Tong et al. 2007 ) and RATS (Clark 2003) checklists (Neale & West 2015) . Participant demographics (gender, race/ethnicity, age, education levels, etc.) are provided in Table 1 . Specifics regarding primary substance, prior treatment, co-occurring disorders, and family history are in Table 2 . Of particular note, there was nearly equal representation of female and male participants (11 9 respectively). Ten of the 20 participants were white, with seven identifying as Black/African American, two as Asian, one as American Indian/Alaska Native, and one as Hispanic/Latino. There was a spread across ages 25-64 and in education level from some high school to completion of a graduate degree. Participants had backgrounds in a wide range of substances: alcohol being the most prominent (90%), with just under a third identifying marajuana 6 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101 https://doi.org/10. /2022 (30%) and with two to three of participants identifying each of the categories of opioids, cocaine, and methamphetamines. 17 of the 20 participants had a family history of SUDs. Initial Reaction to DBS: Unfamiliar and apprehensive, yet interested. Most participants initially expressed unease and concern regarding the physically invasive nature of DBS. While two participants had heard of DBS before, none were familiar with how it worked or its current applications. First impressions often described DBS as 'weird' and 'scary': "wow, it's crazy, because going deep inside the brain is something that you can't really play with" (H12) and "Unlike taking an oral pill or taking a shot, it's invasive. To be honest, that's a little scary" (H14). Despite that initial unease, when prompted at the conclusion of the interview as to whether or not DBS was something they would ever personally consider, only one participant said no outright: "it reminds me of shock therapy … Oh God. I don't want something in my head" (H6). The majority of participants expressed interest, but differed in their perceptions of when DBS would be a reasonable option. Some expressed hesitancy about the exploratory nature of research: "If there's incentive, yeah I'd do it. But this is research. So it's dangerous. I'm a little scared" (H20). Many described seeing DBS as a "last resort," but there was high variation in where people identified that threshold. Some described being open only if they had exhausted all other existing treatment options, while others said they could see themselves reaching last resort desperation with a single relapse: "if I relapse one more time then yeah, I'm all for it" (H16). Others saw themselves as early adopters: "And who to target? … Would it be me at, probably, six months ago? I would definitely raise my hand to say, 'Hey, let me jump on ship'" (H12) and "I would imagine it if it was available now and we're all good to go, I would say, "Let's do it" (H5). Participants described their experiences living with SUDs and in treatment, and then offered perspectives on the prospect of DBS. In this way, their prior experiences shaped the considerations they had regarding DBS. Responses were structured by the five themes from our guide --personal agency, social relationships, stigma, privacy, and relationship with healthcare and research. Living with a Substance Use Disorder (Table 3) . A common theme revolved around addiction being difficult to overcome and, all too often, fatal. Participants felt out of control and at the mercy of their cravings. One participant likened their disorder to a "puppet master" making them do things they could not stop. Participants reported family histories of substance abuse that often involved recurrent relapse, family trauma, and death. Participants recounted struggling with shame about ways their SUDs had harmed loved ones. They felt judged by family members and work colleagues. Nearly all had experienced stigma, e.g. SUD understood as a matter of willpower or indicative of moral failure. Most participants struggled to maintain relationships and reported isolating themselves to hide their substance use and avoid stigma. While some participants described how they were before the SUD, many claimed being an "addict" as part of their identity. They sometimes shared struggles with self-trust and concerns about manipulating others that stemmed from their understanding of the "addict" part of 7 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101 https://doi.org/10. /2022 themselves. This "master manipulator" label may be a problematic feature of some treatment programs, but the participants themselves often used exactly this language. In addition to the social costs of SUDs, participants described financial and emotional costs, often with negative consequences for personal and work relationships, financial resources, and self-esteem. (Table 4) . Participants' sentiments about their treatment and prospect of recovery were often marked by uncertainty, desperation, and determination as they reflected on how much they had lost to their SUD. Some were skeptical of their own ability to recover, given that they had watched peers struggle and relapse. A common concern was uncertainty related to the unpredictability of cravings: "Honestly, I feel like, once complete treatment, if I were to have a bad enough day, I could potentially say just screw it and go get a drink and snowball back to where I was or even worse" (H19). Nearly all participants viewed SUDs as a long-term disease and recognized their recovery as potentially fragile. As one participant put it, "12 steps is lifelong. It's forever" (H20). Participants often shared lessons from their 12-step based programs: the need to rely on others, recognition that they could not maintain abstinence alone, and that even with support, they still have to "do the work" to maintain abstinence. Many also mentioned the importance of surrendering to a higher power. Unprompted, five participants expressed concerns regarding limited treatment options for SUDs. Some had negative experiences with existing treatments (e.g., anti-craving medications with side effects). Financial costs of treatment and the difficulties of finding time in busy schedules were described as burdensome. Participants expressed openness to a variety of methods to achieve recovery, often using the metaphor of "tools in the toolbox" to describe this multi-faceted approach. While many participants emphasized the importance of understanding and minimizing cravings as a recovery goal, even more participants named building social community and repairing relationships as key recovery aims: "It's the isolation part of it. It's crazy because you hear that the opposite of addiction isn't sobriety. The opposite of addiction is connection. It blows my mind how true that is" (H7). A majority of participants also expressed the desire to gain self-understanding and learn how to better process emotions. (Table 5) . Participants expressed concerns regarding DBS risks such as surgical complications or DBS' limited evidence. These were often balanced against existing concerns regarding the high risks of relapse and a desire to aggressively avoid that possibility. Many participants saw overcoming cravings as the hardest obstacle to recovery and were drawn to the possibility of DBS to help quiet cravings and understand their patterns: "I am hopeful to get over these cravings eventually to regain control, to find out more about the causes of why I'm like this, kind of like putting myself out there to myself" (H13). Participants who had co-occurring disorders, some of which might also be treatable with DBS, expressed increased interest in DBS if it could simultaneously help them with their depression or OCD. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101 https://doi.org/10. /2022 Some participants noted how DBS did not seem drastically different from anti-craving medications, and might even be better: "Honestly the DBS kind of sounds more concrete or reassuring than, because I can have a bad day and just say screw it and not take the pill and then succumb to my craving, whereas I can't just take that out of my head" (H19). Others found the physical invasiveness potentially off-putting. A couple participants expressed an openness to potentially using the device, but only temporarily, implying that continued reliance on it might be worrisome: "Getting all-natural is definitely the end goal, for sure, but if I need something to kickstart it, all else has failed, so I'm not opposed to it" (11). Participants viewed the possibility of DBS stigma from others as real, but potentially less concerning than stigma for other SUD treatment. "I don't know why they would view me any differently with one of the devices or taking pills. Well, I would say the pros for this device would be, there's no bottles in my bathroom" (H5). Others thought that any stigma associated with the visibility of the device --scarring, visible wires or battery packs --would be counterbalanced by potential benefits: "If it's not totally obvious. I mean I've got scars everywhere. But ultimately if it is to help with my addiction, I choose my life or this device over something that's noticeable. You know, drunk [name]'s pretty noticeable" (H19). Nearly all the participants spontaneously mentioned the idea of DBS being another tool in their recovery toolbox. They envisioned DBS as working in tandem with other recovery support systems rather than as a singularly curative intervention. Instead of worrying about the stigma of having a device, for instance, one participant recommended "Being completely upfront with people, saying like, 'This is simply just a tool as is all of these 12 steps.' If that's 12 tools that you have in the 12 steps, this is just my 13th tool that kind of gives me a little bit more help. But it's still always up to me" (H1). Participants recognized that a neural device that records information could be viewed as giving access to others regarding the individual's private experiences, or to a kind of surveillance. Some participants jokingly referenced conspiracy theories about implanted chips and trackers, even as they acknowledged the potential value of allowing health care professionals, and sometimes family members, access to DBS data. Other participants raised concerns about sharing that information, however, even with close family members. Neural information was considered too personal, and participants were not certain they could trust others with it. Concerns regarding distrust in law enforcement led to most participants not wanting law enforcement officers ever to have access to neural data. Conversely, one participant with experience wearing an alcohol monitoring bracelet had a positive experience with the bracelet being a helpful accountability mechanism, and thought DBS data might serve a similar role. Some participants were concerned about the financial and time burdens of anticipated DBS programming appointments. Others, however, noted that substitution therapies for SUDs already often require regular check-ins and the associated burdens of appointments, monitoring, and time off from work. Similarly, participants who worked with therapists were already used to making space in their schedules for regular appointments, and found the regular contact helpful for personal accountability and health maintenance. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101/2022.04.21.22273594 doi: medRxiv preprint The importance of patient perspectives for technology development (Table 6) Reflecting on the interviews themselves, most participants saw them as critical for informing the research process by incorporating perspectives derived from personal experience. Some participants also noted the importance of collecting a wide range of perspectives from people with SUDs, to prevent over-generalization. A different take on the value of these interviews framed them as serving an important outreach function of helping inform people with SUDs about the prospect of DBS. Our results show that people in treatment for SUDs are open to the possibility of DBS, despite initial apprehensions regarding its physical invasiveness and novelty. This openness often arose from the difficulties and high burdens participants had faced from their SUDs, and their frustrations with the limitations of existing treatment options. In this way, participants' responses contrasted with prior studies of clinicians and researchers that advocated for more restrictive "last resort" criteria (Ali et al. 2016; Lee et al. 2016 ). Participants viewed SUDs as serious diseases that need better treatment options, and considered DBS risks as reasonable in the context of their previous experience. Our five themes -personal agency, social dynamics, stigma, privacy, and interactions with the healthcare system -tracked the ways this potential user group's experiences with their SUD and treatment shaped their thresholds of interest in DBS. The language of agency is commonly used, by both people with SUDs and clinicians, to discuss SUDs and treatment programs (e.g. McCullough & Anderson 2013). Our findings underscore the salience of personal agency in the experience of addiction. They further reinforce findings, from our team and others, that a person's interest in implantable neurotechnology is shaped by their experience of how disease and treatment options affect their agency (Versalovic & Klein 2020; Mathers et al. 2016; Maier et al. 2013) . Participants shared how cravings can lead to a perceived near-total loss of agency, the paradox of needing to surrender control to regain it (e.g., 12-step based programs), and the ultimate aim of regaining agency in their lives. Though control over cravings were often cited as the most difficult barrier to recovery, aims for recovery went further. They included being able to better achieve life goals, repair relationships, and rebuild a healthier community. As a result, DBS was seen as "another tool in the toolbox" that would ideally ease the intensity of cravings but could never do the complex and expansive work recovery often requires. Caregivers and significant others play a major role in how people understand and experience SUDs and treatment (Earnshaw et al. 2019). Participants often had extensive family histories with addiction and intimate understandings of the ways both their substance use, and those of other family members, had harmed people around them. Participants' perspectives on different family relationships were complex and varied; they typically wished to repair at least some familial relationships, often identified a need to build more intentional boundaries with certain family 10 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101/2022.04.21.22273594 doi: medRxiv preprint members, and occasionally aimed to build a new support community entirely. As such, there was wide variation in the amount of trust participants had in family members and in what role they envisioned family playing in DBS monitoring. Trials of DBS for psychiatric disorders often expect participants to have at least one family member involved with their care and to provide support (Widge & Dougherty 2015) . Our results highlight the need to treat this topic with heightened care in the SUD population. Participants often noted personal shame regarding past actions and mourned the loss of trust/faith of loved ones. Many desired to make amends in treatment. Notably, some respondents viewed DBS as a potential tool towards those amends, by "proving" their commitment to treatment to loved ones (in hopes of regaining trust). Stigma is a well-recognized challenge in SUDs, and is a barrier to both treatment and long-term recovery (Cernasev et al. 2021; Agterberg et al. 2020) . Our results suggest that stigma and shame may be present in, but not a barrier to, DBS trials in SUDs. Some potential participants will be deterred by concerns about stigma, but others said they would be relatively comfortable even with visible external signs of treatment, for example, cranial scars. Participants expressed that certain kinds of treatment, particularly agonist medications that require regular visits to specialty clinics, were likely more stigmatizing than DBS. Addressing stigma related to neurotechnology is important (Racine & Bell 2012) , and may require recognizing the complicated interplay between hopes of reducing disease-related stigma and taking on device-related stigma (Goering et al. 2021 ). In the current study, an added part of this interplay was a frequent sense that DBS could reduce stigma by proving to others that SUDs are biological diseases (not mere "choices" or "moral failings"). People with SUDs experience limitations on and threats to privacy due to the degree of criminalization and stigma of SUDs (Kleinman & Morris 2021; AWHONN Position). Limitations on privacy occur, for instance, at the intersection of SUDs and the criminal justice system (e.g., drug monitoring) (Polles et al. 2021; Chang 2020) . While much of the discussion of privacy in the context of novel neurotechnology, like DBS, has focused on data security (Bonaci et al. 2014) , data ownership (Naufel & Klein 2020) , or agency (Schönau et al. 2021), our findings suggest that privacy related to the DBS and the criminal justice system is an underappreciated concern for SUDs specifically. Addiction has a complicated relationship to the health care system; there is often fragmented care, limited access to addiction specialists, and, in the United States in particular, insurance barriers. Even with efforts to understand SUD as a disease and not a personal failing, medical professionals may still be inclined to wonder why individuals do not simply stop using. SUDs exist at a nexus of failures of health care access, biased beliefs about responsibility for use, and personal blame and shame. Our participants were already in treatment, and so had surmounted the initial access to care barrier. They were used to regular followup treatment, and the likelihood of some surveillance from their providers and 12 step groups to support their sobriety. They were not intimidated by the prospect of followup treatment for DBS settings adjustment and upkeep, with oversight from 11 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101/2022.04.21.22273594 doi: medRxiv preprint medical professionals. That said, participants' references to the histories of research misconduct on vulnerable populations such as the USPHS syphilis study at Tuskegee and lobotomies flagged their concern for the potential misuse of neural technology. In sum, our participants' reports suggest that prospective users' views of emerging neurotechnology like DBS are inextricably bound up with prior experiences and assumptions about SUD treatment. Considering the specific therapeutic context is key to understanding risks and benefits of an invasive, novel therapy. For example, participants expressed higher comfort with the potential visibility of a DBS device perhaps due to their familiarity and comfort with the broad SUD disclosure their 12-step program encouraged. Additionally, the 12-steps' emphasis on having a number of tools in the recovery toolbox led to participants making sense of DBS as another "tool in the toolbox" rather than as an independent treatment option. From this, we note the importance of talking with people with the conditions under consideration for neural device development. Contra Carter et al. (2011), we found that people in SUD treatment, regardless if for alcohol or opioids, view addiction as "deadly" and available addiction treatments (e.g., anti-craving medications) as either ineffective or coming with undesired side effects. This was broadly true regardless of primary substance of use. Many participants are living with co-occurring disorders that have been proposed as clinical trial exclusions (Ali et al. 2016 ). But given how many people in our study and the broader SUD population have co-occurring disorders (Han et al. 2017) , this perspective should perhaps be reconsidered. The potential reduction of confounding study variables may not be justified if it makes the data inapplicable to the majority of people with severe SUDs (Compton et al. 2007 ). Indeed, people who are in SUD treatment refractory with frequent relapses may be more likely to live with co-occurring disorders (Najt et al. 2011; Bradizza et al. 2006 ). There is some reason to expect dual benefit; the most studied DBS target for SUDs (the nucleus accumbens and surrounding white matter) also has evidence for relieving depressive and anxious symptoms Widge et al. 2018 ). Finally, many researchers (Carter et al. 2011 , Ali et al. 2016 , Lee et al. 2016 suggest that DBS should initially only be trialed for those who have exhausted other treatment options. While this approach is understandable, our results make clear the complexity of identifying what participants view as "last resort" circumstances. The deadliness of SUDs may incline some people toward invasive interventions after relatively few rounds of treatment. Further, this approach may neglect the fact that standard treatment options are often not fully available to all people or compatible with their recovery (e.g., with work and family commitments). These findings have limitations. Participants were drawn from two clinics within the same treatment system and, notably, all expressed positive experiences with their current treatment program. This trust could have led to more positive appraisals of the potential of DBS, and research more broadly. Further, though we extended recruitment to achieve higher racial diversity, we undersampled many minoritized perspectives, particularly those who hold Asian, Native American, Latino, and Queer identities. Finally, discussion surrounding DBS remained theoretical; no participants had direct experience with the technology. This lack of experience could have led to stronger framing effects from the video and interview guide. As such, we echo the calls of others for future work to address 12 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101/2022.04.21.22273594 doi: medRxiv preprint these perspective gaps (Goering et al. 2022 , Wexler & Specker-Sullivan 2021 Shen 2020) and conduct qualitative work with trial participants to continue tracking these issues as clinical trials for DBS for SUDs expand. Ultimately, our study shows the importance of understanding the specific contextual features of a disorder, how it is experienced by people who are differently socially positioned, what their treatment options are, and how treatment affects their perspectives on themselves in order to evaluate the possibility of a novel therapy. Addressing the challenges of SUDs will require a multi-pronged approach that makes use of a variety of intervention and support strategies. Participants' openness to DBS as one "tool in the toolbox" for SUD treatment is warranted, but should be considered against the backdrop of substantially unequal access to existing forms of treatment and support, and pressing social problems that contribute to and exacerbate the experience of SUDs. DBS may be able to help some people make significant strides in their recovery, but it cannot address all the broader SUD challenges entangled in our social world. We thank Ms. Christi Sullivan for filming and editing the DBS briefing video, Hazelden's Adam Erdman for helping with interview logistics, and all of our participants who generously offered their time and shared their personal experiences with SUDs and their treatment. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101/2022.04.21.22273594 doi: medRxiv preprint . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101/2022.04.21.22273594 doi: medRxiv preprint . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. Education level Some high school 3 (15%) Some college 6 (30%) 2-year college degree 3 (15%) 4-year college degree 6 (30%) Graduate-level degree 2 (10%) . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. 18 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101 https://doi.org/10. /2022 alcoholic would come in they'd be like, "Oh, put him in the back." They're definitely treated differently." (9) "My [parent] for example, "Why can't you just quit drinking?" He does not understand addiction. He believes it's all willpower, stuff like that."" (19) "I feel like I get stereotyped as that typical drunk [ethnicity] guy, at the store buying alcohol first thing in the morning, getting drunk, sitting out all day, just drinking and lazy [ethnicity] stereotype... That actually bugs me because I typically, at least at a minimum put in about a 70 hour work week, easily... I've worked very hard at what I do, but I do feel like I get stereotyped as that lazy alcoholic minority." (10) "I live in wine country. There are people drinking at 10 o'clock in the morning, and nobody says anything. So, once you say you're an alcoholic, the way people treat you is going to change rather than, 'I'm a wine aficionado.' And I definitely think living near [city] and stuff, the stigma around like meth, heroin and stuff is a lot greater than alcohol. Even though it's the same disease just manifested in a different way." (9) Privacy "When you're going through addiction, you're hiding almost everything." (10) " I would say my addiction would keep me more private as in holding, like not saying certain things about myself, or hiding that I went out and got drunk last night." (9) "I isolated hardcore. Like, most of the people in my life had, and maybe some of them still do. They have no idea." (6) Interactions with Healthcare System "So like I said, bad experience at detox, literally went there, came out, drank a whole handle and it just got worse…" (14) "I do believe there is so many beneficial things that the healthcare system does for us that it's just absolutely ignorant to completely distrust them fully. But also it gets to a point where sometimes the opioid pandemic is kind of started by doctors. They continue to prescribe people with these opioids that they actually don't need. I mean, if I get my teeth pulled, give me five Vicodin, and I'm fine. Don't give me 30 of them and then three more refills, which that didn't happen to me, but that's just an example of things that I've seen before." (2) "In terms of me with my primary care physician, I've moved around a lot for work, so I've bounced different primary care physicians. I never had an ongoing long term therapist... Until I came here, I really haven't dealt with healthcare providers." (4) *(bolding in tables done for emphasis by authors) . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101 https://doi.org/10. /2022 Personal agency "There's some dudes up there, they've been in rehab eight times. You can see that they really want to try. It's just life hits you hard, bro. Things happen. You get triggered just like you get... This disease is no joke." (20) " They always tell you, 'Depend on your higher power.' Depend on that power that's higher than yourself, because you can't depend on just you. Because if you could depend on just you to get up out of this, you wouldn't be in this situation of addiction. You wouldn't have the relapses. You wouldn't have the cravings or the urges, if you could just depend on yourself. So apparently we can't just depend on ourselves or rely on ourselves. We need that help." (12) "A lot of people that have alcoholism, they probably drink most of their money away. And if they're working to stay on their feet, them getting a job, they better put their sobriety first… But bills don't give a damn about that at the end of the day. You know what I'm saying? Bills don't give a f*** about sobriety." Social Dynamics "So I'm looking forward to mending those relationships sober. I'm looking forward to that. It's not going to be easy cause I did a lot of wrong stuff and I feel really guilty for a lot of the stuff that I did and I'm going to have to make amends for it and apologize and put myself out there. That's the hardest part of recovery... how much you have to put yourself out there so that you can get better, so that you can recover and not drink." (18) Stigma "Yeah. I feel like there is. I mean, it's like, "So-and-So's back in treatment again,"" (10) "I think being an inpatient, there's a lot more stigma than if I would have just said, "I'm going to have to go to therapy for my drinking." Therapy now is kind of what everybody does." (9) Privacy "I know that a big part of being in recovery is to be honest and open about our addiction and stuff, but I know a lot of people that want to be private about them." (7) " My addiction counselor had mentioned, 'Tell as many people as you can because the more people that are on board with this, the easier it is because you need your people.' Because in active use, I isolated so much that I had no one really other than my partner." (6) "Just my privacy things. I'm super concerned, even, to have any mention of this on my medical record, or anything, just because I work in a large hospital, and I know it's easy to get to other people's medical records, and then give them stuff. I don't want people to think I'm a f***ing opioid addict." (10) 20 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101/2022.04.21.22273594 doi: medRxiv preprint "They give you your antidepressants, you got to come back in six weeks to see if it's working for you and then come back three months later. I mean, anytime you are doing something or taking something that's supposed to continually help you, but there's still risk of side effects, it's absolutely ignorant to not continue to follow up with your healthcare provider." (1) "I mean, in this fast paced American lifestyle that we live in, everybody's working 40 plus hours a week, you got kids, you got sports activities, schooling and all this stuff that, I mean, sometimes I don't go to the dentist just because I don't have time to go to the dentist. It's the fear of going into the healthcare system, but also the inconvenience of trying to fit it into our busy, crazy daily schedules." (1) Social relationships "I would probably wear one of those as a badge of honor, one of those deep brain things just like, "See, I did everything I could."" (9) . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101 https://doi.org/10. /2022 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101 https://doi.org/10. /2022 able to maintain more privacy with the device." (19) "I wouldn't want someone to know I have a thingy in my head. Unless it was because they're part of my team to make sure I'm safe, to make sure it's helping me out or whatever… I just always want to be able to tell my own story." (6) "[Law enforcement accessing neural data] That I probably do have an issue with. I have been manipulated by the justice system several times. I have very little trust in them… I have several [relatives] doing life sentences... I have seen how they apply pressure to people that have absolutely nothing to do with it… I've never felt a law enforcement officer was there to help me… My trust in law enforcement, the entire system and several officers personally, it's absolutely zero. I'd have a huge problem with that, actually." (11) " So it's kind of like a house arrest bracelet, however you can leave the property and things like that. It just monitors the alcohol intake from your sweat... But I do think that is good because I do need those consequences, otherwise I'm just going to fall right back down the rabbit hole. So if someone is on probation or some sort of anything involving law enforcement, I do believe they should have access to it [neural data]. However, if it's just me being a free bird, I don't think they should be able to." (19) "You don't want that to be used against you in court or something like that. One of the things people mentioned about George Floyd was his substance abuse and that wasn't even the major factor. Despite a person having addictions or whatever it may have been the case, it was wrong, the action. So you can't discriminate for that, but people hear something, then they demonize substances." (18) "People feel more comfortable seeing a paramedic more than they would be a police officer, because when police show up it's more of an aggressive factor." Interactions with Healthcare System "Unfortunately, most alcoholics that are out there are middle-class and poor. They're not rich. They don't have a lot of time. Like me, I make okay money, but I got to put in a lot of hours. So like once every two weeks, yeah, I'd agree to it. I'd probably mess around with it, but this is all research, like you said. How long would the thing take? How long would it take?" (20) "For me, things like more logistical things would be of importance. How long is the study? How often do I have to go see a clinician or a doctor or whatever? Where are they located? Especially, I live in [city], so the traffic's pretty bad." "It's just a thing. Not necessarily good or bad, it's just part of the treatment. I don't know. I already see a therapist regularly, so… I had to meet with the person that does my psych meds like once a month anyways… I don't think there's any medical treatment that I'm aware of where you don't have to check in with the doctor periodically." (3) . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101 https://doi.org/10. /2022 "To me, that's [follow-up clinic visits] just part of the maintenance of it. I've only been here a week and they've adjusted my medications three times already… if I personally had it, I could see myself getting irritated without the instant fixing of the cravings I guess. I could see that, but it's not like my [anti-craving medication] NAC, started working immediately." (19) "I know in the African-American communities, some people would be okay with it. A lot of people wouldn't. It's just bad connotations with medicine. A lot of people would point to Tuskegee but it's many incidents. Where the distrust... But it would be beneficial for people, all colors, all types because some people feel like they're powerless against drugs and certain substances, especially alcohol." (18) "Money talks, bullshit walks, and this is dealing with the brains. So you're going to have to come out of pocket... it's all about figuring out how to compensate them because putting something in somebody's head and if they have to make out once every two weeks... Most of these people are like me and they got to work. So compensate them." (20) "I mean, no offense to any researchers and doctors, I guess, you probably shouldn't take offense, but a lot of you guys aren't drug addicts and alcoholics. And as much as you can understand about the brain and how these things work, you haven't actually experienced these things." (1) "If you think that this treatment option is going to be successful for addicts or other people with substance abuse, you should engage them ... To get their feedback on how they would view it, how they may, just to make sure it's actually going to work. Rather than investing in going down this path and then finding that a lot of people would never be open to this type of treatment." (4) "You want to have these conversations. These are the things you really want to do because, the more involved they are in a process like this, the better the outcome will be… You want somebody that can actually A, understand you, B, relate to you, C, help you do it. So these conversations are more than helpful." (12) "I think involving people who are dealing with addiction or have family members who are dealing with addiction, looping them in even when this is just a possibility and not even a current treatment would be very helpful ... With technologies, there's a level of expertise needed to truly understand it. And so, the common man or woman, they either have to have trust from their provider, or they're going to have to build a pretty extensive understanding of it, or some combination of those things to buy in, in my perspective. Knowing the population and their ability to understand neurological treatment, I think the more trust you can build over time, the better. After talking to you, I would feel more comfortable." (12) "A lot of people do not understand alcoholism or substance abuse. They just don't. And unless you've been in that you won't know. Even if they say they do from observation, looking on the 24 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted April 25, 2022. ; https://doi.org/10.1101 https://doi.org/10. /2022 outside in is not the same as a person that's been going through it physically, mentally, all of that." (18) "I feel honored to be part of trying to figure this thing out." (5) 25 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. 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