Social networking online to recover from opioid use disorder: A study of community interactions

Abstract

Background

Social media has increasingly become a venue for health discourse and support, particularly for vulnerable individuals. This study examines user-generated content of an online Reddit community targeting individuals recovering from opiate addiction.

Methods

100 Reddit posts and their comments were collected from the online community on August 19, 2016. Posts were qualitatively coded for opioid use disorder (OUD) criteria as outlined by the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), as well as other common themes. Comments were coded for expression of distinct therapeutic factors (i.e., instillation of hope, universality, imparting information, and altruism). All posts and comments were coded for addiction phase of the author (i.e., using, withdrawing, recovering).

Results

73 unique usernames authored the 100 posts. Among the 73 usernames, 33% (24/73) described enough symptoms in their posts to meet DSM-V criteria for OUD (16/73 or 22% mild severity, 7/73 or 10% moderate severity, and 1/73 or 1% high severity. Among the 100 posts, advice was requested in 43% (43/100) of the posts and support was sought in 24% (24/100) of the posts. There were 511 comments made on the 100 posts, nearly all of which contained at least one distinct therapeutic factor (486/511, 95%) with altruism being the most common (341/511, 67%).

Conclusions

This research provides validity to the supportive content generated on an online recovery-oriented community, while also revealing discussions of self-reported struggles with OUD among group members. Future research should explore the feasibility of incorporating social media-based peer support into traditional addiction treatments.

1. Introduction

The current opioid epidemic in the U.S. is being described as the “worst drug crisis in American history” (Nolan and Amico, 2016). From 1999–2015, the rate of opioid overdose deaths tripled from 16,849 to 52,404 annually, and the prevalence of opioid use disorder (OUD) likewise is continuing on an ascending path with an estimate of 35 million people abusing opioids worldwide (Rudd et al., 2016; United Nations Office on Drugs and Crime, 2017). Substance use disorders are extremely maladaptive and difficult to overcome. Many individuals struggle with overcoming opioid abuse due to the intense withdrawal symptoms that occur when opioid use is discontinued that may include dysphoric mood, nausea or vomiting, fever, insomnia and/or muscle aches among others (American Psychiatric Association, 2013). Accordingly, relapse from opioid abstinence is common and makes the necessity for accessibility to OUD treatment vital for many to experience success in their recovery (Gustin et al., 2015; Martin et al., 2007).

1.1 Treatment for Opioid Use

Effective treatment of OUD has been identified as a national priority to reduce the rates and societal costs of individual disability associated with OUD, the infectious disease burden associated with intravenous opioid use (especially hepatitis C [HCV] and HIV transmission), escalating rates of accidental opioid overdose deaths, and pediatric opioid ingestions (Office of National Drug Control Policy and US Executive Office of the President, 2011). There are many different forms of treatment for OUD, with the most common forms being pharmacologic therapy (e.g., Methadone Maintenance Therapy (MMT), Buprenorphine, Clonidine, Lofexidine), evidence based psychosocial interventions, cognitive behavior therapy, dynamic psychotherapy, aversion therapy, psychosocial therapy, group therapy, and Narcotic Anonymous (NA) groups (Bart, 2012; Dixon, 2017). However, only a minority individuals with OUD seek out or receive treatment (Jones et al., 2015), and further lowering the likelihood of recovery is that the treatment that is available often lacks structural support (i.e., social connectedness, or embeddedness in a social network) which is necessary for success (Havassy et al., 1991; Saloner and Karthikeyan, 2015; Wasserman et al., 2001).

1.2 Groups Online for Substance Use

In the setting of low engagement in traditional treatment options, some opiate users turn to social media for health-related information and peer support (Day et al., 2013). Online social platforms, including web forums, allow individuals to freely share their experiences, post questions, comments, and opinions; it can also provide a very rich source of unsolicited self-disclosures of drug use behaviors (Holt-Lunstad et al., 2010). Studies have shown that for individuals struggling with addictive behaviors, online peer support groups provide an open forum for discussion while minimizing perceived barriers and stigma (De Choudhury and De, 2014). Indeed, Morahan-Martin and Schumacher (2003) found that isolated individuals were more likely to be disinhibited and engaged online as opposed to when they were in face to face communication. Social media has the resources to provide an interactive platform between individuals who desire cessation from their opioid use or are currently recovering from their opioid use. However, social media has never been studied as a platform for individuals to express symptoms of OUD, risk of relapse, issues with cessation, and therapeutic factors among other social media members.

The current study investigates the online content of one relatively large online community (+5,000 subscribers) that describes itself as a forum to help individuals who are recovering from OUD. To protect the anonymity of this “Opiates-Focused Forum”, we hereafter reference this online community as “OFFopiates”. OFFopiates was organically developed (i.e., without hierarchical or overarching control) and exists on Reddit, a free, anonymous, and popular social networking site that is used all around the world but primarily in the US. In consideration of emerging evidence about social media as an online and accessible tool to potentially support individuals during recovery, we performed a content analysis of OFFopiates. Specifically, we aimed to understand the social networking occurring on OFFopiates by qualitatively coding the online questions/comments posted by its subscribers as well as the follow-up, subsequent responses that those subscribers received from other individuals within this community. To further validate OFFopiates as a community for individuals who are recovering from OUD, in particular, we focused a segment of our content analysis on delineating the extent to which the questions/comments posed by its subscribers aligns with the expression of OUD as categorized by the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM–5; American Psychiatric Association, 2013).

2. Methods

In this study, publically available Reddit posts were analyzed from OFFopiates. The posts are reported without usernames and the wording of the posts are changed for ethical concerns. This study is classified as non-human subjects determination by Washington University’s Human Research Protection Office.

2.1 Data Collection

Reddit post content is organized with the use of different filter tabs. The first 100 posts under the “hot” tab were collected from OFFopiates on August 19, 2016. Posts are filtered to appear under the “hot” tab with the use of a Reddit algorithm which analyzes the time in which the post was submitted and the number of up and down votes the post receives. Reddit users up vote when they like posted content and down when they do not. More recent posts with mainly up votes are ranked higher on the “hot” tab, and are viewed by more people (Reddit, 2015; Salihefendic, 2015). The posts were archived through an online extension of NVivo 10, a qualitative analytic software, called NCapture. The program takes a screenshot of web-based material and transforms the screenshot into a PDF file for easy upload to NVivo. For each post, the post author’s username, post content, comment author name, and comment content were recorded. A master copy of the codes was also entered into Research Electronic Data Capture (i.e., REDCap) a secure, online, data-driven database for clinical research for analysis.

2.2 Theme Development

2.2.1 Post Author Characteristics

In order to determine the extent to which OFFopiates members self-reported symptoms consistent with OUD, three research team members developed a codebook based on the OUD DSM-5 criteria. DSM-5 symptoms of OUD are 1) Opioids taken in larger amounts or over a longer period that was intended; 2) Persistent desire or unsuccessful efforts to cut down or control opioid use; 3) Spending a significant amount of time trying to use, obtain, or recover from opioid use; 4) Cravings, or a strong desire or urge to use opioids; 5) Failure to fulfill major obligations (work, school, or home); 6) Opioid use causes/makes worse social or interpersonal problems; 7) Gives up or reduces important social, occupational, or recreational activities; 8) Uses even in situations that are physically hazardous; 9) Continued use despite a persistent or recurrent physical or psychological problem; 10) Tolerance; 11) Withdrawal symptoms.

Each of the 100 posts was coded for the expression of DSM-5 OUD criteria. After coding was completed, post authors were classified into a DSM-5 severity level based on the number of criteria mentioned in the post (e.g., mild severity, 2–3 symptoms; moderate severity, 4–5 symptoms; severe severity, 6 or more symptoms). In the event that one person posted multiple posts, the DSM-5 criteria were summed across all posts by that username in order to assign a severity level. Similarly, post authors who provided details about their opioid use/sobriety status were classified into currently using (i.e., used opioids within 48 hours), withdrawing (i.e., sober ≤ 30 days), or recovering (i.e., sober > 30 days) from their opioid use. These categories were based on similar classifications of addiction phases developed by MacLean et al. (2015).

2.2.2 Post Themes

In addition to the DSM-5 criteria, all 100 posts were coded for the following identified themes 1) Relapse concern (e.g., preoccupation with relapse or inability to maintain sobriety); 2) Redditor mentions seeking help from a medical/health professional; 3) Redditor is seeking advice/support for someone else (i.e., a close friend or partner); 4) Redditor is seeking support from other subreddit members; 5) Redditor is seeking advice from other subreddit members; 6) Redditor mentions/feels/is worried about a negative physical or mental effect of opioid use (not including withdrawal); 7) Redditor mentions use of other illicit drugs/medications, tobacco, alcohol or marijuana; 8) Redditor mentions successes and/or positive recovery period; 9) Redditor mentions opioid source (i.e., family, friends, other who provides the opioid); and 10) Redditor mentions the subreddit is a good resource. Posts could contain multiple themes.

2.2.3 Comments

Comment authors were classified into using, withdrawing, or recovering from their opiates use. As with the post authors, when multiple comments were made by the same username, all mentions of sobriety status across the comments were considered before assigning a classification. Comments were coded for four distinct therapeutic factors commonly found in group therapy, including instillation of hope (e.g., support), universality (e.g., validation), imparting information (e.g., advice), and altruism (e.g., shared personal stories) (Yalom and Leszcz, 2005). Comments coded as imparting information were further coded if the comment author gave bad or potentially harmful advice or if the comment author specifically suggested seeking help from a medical professional and/or 12-step program/meeting. Comments were not coded if they were made by the same person who authored the original post. Multiple therapeutic factors could be coded for each comment.

2.3 Coding

Three research team members (ARD, KEL, SJS) independently coded all 100 posts and their accompanying comments in weekly sets of 14–15 posts. After coding each set individually, team members met weekly to review coding and discuss any discrepancies with the team leader (PCR). A master copy of the codes was created and entered into NVivo and REDCap for further analysis.

3. Results

3.1 Posts

3.1.1 Author Characteristics

The 100 analyzed posts were written by 73 unique usernames. Of these 73 individuals, 22% (16/73) were classified as mild severity OUD (i.e., 2–3 symptoms), 10% (7/73) as moderate severity OUD (i.e., 4–5 symptoms), and 1% (1/73) as high severity OUD (i.e., 6 or more symptoms). Twenty-six percent (19/73) of the post authors only mentioned one DSM-5 criteria in their posts, and were therefore not assigned an OUD severity level. Additionally, 41% (30/73) did not describe any symptoms that were consistent with DSM-5OUD criteria.

Social or interpersonal problems caused or worsened by opioids use was the most common DSM-5 criteria mentioned by the 73 post authors (17/73, 23%). Large amounts or long duration of opioids use and expressions of a persistent desire or unsuccessful effort to cut down or control opioid use were each mentioned by 22% (16/73) of the post authors, and withdrawal symptoms were discussed by 19% (14/73) of the post authors. Other less commonly mentioned criteria included continued use despite a persistent or recurrent physical or psychological problem (8/73, 11%), cravings (7/73, 10%), an inability to fulfill major obligations (6/73, 8%), and giving up or reducing important social, occupational, or recreational activities (5/73, 7%). Examples of these criteria are provided in Table 1.

Table 1.

Frequently observed DSM-5 opioid use disorder criteria by unique Reddit authors (N = 73)

DSM – 5 Criteria Codes	Number of Posts	Examples
Opioid use causes/makes worse social or interpersonal problems	17	I had everything I desired. A wonderful job and the girl of my dreams. Opioids took over and destroyed everything in my life. I lost my house, job, and girl. My girl was ruined when I told her and she doesn’t want me back. We talked about getting married. My significant other won’t speak to me anymore because they found out I had been experimenting with opioids here and there, developing a little habit.
Opioids taken in larger amounts or over a longer period that was intended	16	I’ve been doing this (misusing opioids) for over 3 years. My tolerance is wayyyy too high, using opiates for 5 years.
Persistent desire or unsuccessful efforts to cut down or control opioid use	16	My efforts to control my opioid use is like a merry go round, on day 3 again and ready to stick with it. I’ve been wanting to kick opioids for a long time now but I just can’t make it through withdrawal. I threw away my 8 months of hard work in exchange for 2 weeks of chipping and 2 weeks of constant using.
Withdrawal symptoms: Cessation or reduction opioid use that has been heavy and prolonged, administration of an opioid antagonist after a period of opioid use	14	Although I have a lower tolerance than most people on here, I still experience an overall sluggishness and soreness in my muscles. EXACTLY 24 hours into this shit. The swings that I am taking physically, emotionally, mentally.....crazy. I go from feeling fine and telling myself this isn’t bad to all of the sudden feeling so tired and drained that I could pass out and die at any second. Most of my symptoms are subsiding except for back pain, RLS, insomnia and crying all the time. Plus I have no energy. I want to be done with all this shit. I honestly don’t know why I keep going back to opiates.
Continued opioid use despite a persistent or recurrent physical or psychological problem	8	I am so weak. My back is constantly in pain and I lost all of my muscle during my year-long binge. If it wasn’t for my fiancée in the same situation as me, I would have shot my head off every step of this journey. I crossed the line where it became too much for me to handle. The world was degraded into meaninglessness and I felt that suicide was inevitable, rather than a choice that I had.
Cravings, strong desire or urge to use opioids	7	I constantly have a feeling that I would use (opioids) right now if I could and it is a terrible feeling to have. Today, my cravings are causing me intense guilt because if I had opioids in front of me I would think about the high first and my family second.
Can’t fulfill major obligations (work, school, or home)	6	My opioid obsession has led to a $33,000 credit card bill. I’ve been using again for a few months now and I’m about to be fired from my job due to having so many absences. I cannot lose this job so my options are to either quit using now or tell my boss that I have an issue to try and save my job

^*Codes mentioned ≤5 times: Spending lots of time trying to get opioid or use opioid or recover from its effects; Gives up or reduces important social, occupational, or recreational activities; Uses even in situations that are physically hazardous; Tolerance

Additionally, 64% (47/73) of post authors mentioned their sobriety status. Of the 47 individuals that mentioned their sobriety status, 23% (17/47) were classified as recovering, 21% (16/47) were withdrawing (i.e., sober less than 30 days), and 19% (14/47) were currently using opioids (i.e., sober ≤48 hours).

3.1.2 Post themes

The analyzed sample of posts commonly requested advice (43/100, 43%) and/or support (24/100, 24%) from other subreddit members. Only 5% of posts (5/100) sought advice/support for someone other than the post author (i.e., close friend/partner). Conversely, 19% (19/100) of posts provided support/advice to other subreddit members. Eighteen percent (18/100) of posts specifically mentioned OFFopiates as a good resource.

The use of other illicit drugs/medicines, tobacco, alcohol, or marijuana was mentioned in 22% (22/100) of posts. Only 15% (15/100) of posts mentioned getting medical help from a health professional. A successful/positive experience while in recovery was mentioned in 15% (15/100) of posts. Twelve percent (12/100) of posts mentioned feeling worried about a negative physical or mental effect as a result of their opioid use, and 9% (9/100) mentioned concerns surrounding relapse. Other less commonly observed themes included mention of the opioid source (5/100, 5%) and the concerns about how to tell others about their addiction (2/100, 2%) (Table 2).

Table 2.

Other themes expressed in Original Posts (N = 100)

Other Theme	Number of Posts	Examples
Redditor is seeking advice from other sub-reddit members	43	Has anyone gone to sunset detox in NH? Going there today and curious as to what I am headed into. I need help. I just quit codeine and don’t know what to expect. Do you think I can continue to take Gabapentin to manage my anxiety? To put it in perspective, I want to be AA/NA clean/sober.
Redditor is seeking support from other sub-reddit members	24	Please provide advice or suggestions as to how one might move forward in my situation. Hoping to get a little advice and perspective by posting on here
Redditor mentions use of other illicit drugs/medications, tobacco, alcohol or marijuana	22	I smoke so many more cigarettes now that I have quit opiates so I am considering switching to vaping because nicotine levels can gradually be lowered I did meth everyday but no opiates so I didn’t have any withdrawal I have been off opiates for 90 days and now I’m trying to quit drinking too but it is so much more difficult because it is everywhere and so many things are associated with it, even though I am not physically dependent on alcohol
Redditor gives support/advice to other sub-reddit members	19	We tend to focus on things that aren’t going our way and forget the beauty in life, don’t do that How is everyone doing? How is everyone feeling? How are we all overcoming our addictions on this day?
Redditor mentions the sub-reddit as a good resource	18	Thank you everyone for your abundant support and love. This subreddit has been my saving grace. Thanks I can’t talk to anyone in my life about this so I just need to talk about it in this post

^*Codes mentioned ≤15 times: Redditor is getting medical help by a health professional; Redditor mentions successes and positive recovery period; Redditor mentions/feels/is worried about negative physical or mental effect of opioid use; Relapse concern; Redditor is seeking advice/support for close friend/partner; Redditor mentions where they get their opioids; Redditor has concerns about how to tell others about his/her addiction.

3.2 Comments

A total of 524 comments were made on the 100 posts; 13 comment authors were the same as the post author (e.g., to clarify and/or update the original post) and were removed from analysis. This resulted in 511 comments made by 183 unique authors. Of the 183 comment authors, 27% (50/183) were classified as recovering, 15% (27/183) were withdrawing, and 3% (6/183) were current users of opioids. Sobriety could not be ascertained for 55% (100/183) of the comment authors.

3.2.1. Therapeutic Factors

Nearly all of the comments contained at least one of the four therapeutic factors of interest (486/511, 95%). Thirty-one percent (156/511) of the comments (31%) contained two therapeutic factors, 14% (70/511) contained three, and 5% (24/511) contained all four therapeutic factors. Altruism (i.e., sharing of personal experiences) was the most common (341/511, 67%). Almost half of the comments (232/511, 45%) imparted information to the post author. Of those, 29% (68/232) suggested seeking help from a medical professional and/or 12-step program and only 1% (3/232) contained bad/potentially harmful advice. The therapeutic factor, instillation of hope was observed in 38 % (196/511) of comments and universality was seen in 17% (85/511) of comments. Examples of these distinct therapeutic factors can be found in Table 3.

Table 3.

Frequently observed distinct therapeutic factors by in sub-reddit comments (N = 511^*)

Distinct Therapeutic Factor	Number of Comments	Examples
Altruism (e.g., personal experiences)	341	Day 3 after a 4 day relapse. Started this recovery thing 27 days ago, this relapse makes it feel just like the beginning though. This is so hard I just want to get high so fucking bad. Heroin is not awesome. I just relapsed and it sucks.
Imparting Information (e.g., advice)	232	I suggest in-patient rehab since you seem to struggle with staying stopped. It took more than a day for things to get this bad, it’s gonna take a little bit for things to get good. It really takes time and dedication. Don’t give up, you just need to want it bad enough.
Comment specifically suggests seeking help form medical professional and/or a 12-step program/meetings	68	Meditation, support groups, etc. also maybe talk to doctors but be honest about part drug use to avoid being prescribed something dangerous perhaps? Hugs GO TO REHAB? It is wonderfully comforting for us to be in a controlled environment after a long run living hard drugs.
Comment gives advice that is bad/potentially harmful	3	Smoking bud ALWAYS helped me detoxing off opiates
Instillation of Hope (e.g., support)	196	Congrats!!! You are a miracle:-) Keep going! <3 <3 <3 Doing the right thing does not always feel right!! Stay strong y’all. It’s your life you are fighting for Best wishes to all and thank you. Every bit of encouragement makes a difference between success and failure.
Universality (e.g., validation)	85	I’m in the same boat as you. Take it from those of us who have made it to the other side, it is so worth it.

^*N = 524, but 13 comments excluded from analysis because they were written by the original post author

4. Discussion

This study provides an exploratory analysis of user-generated content from OFFopiates which is an organically formed opiate-related self-help group on Reddit. Our in-depth analysis of content posted on this forum reveals discussions of self-reported struggles with OUD among group members. The majority of unique posters in our sample met at least one criteria of OUD, of whom 1/5 identified as currently using opioids. Only a small number of OFFopiates members appeared to be engaged in treatment, which is consistent with national surveys estimates (less than 20% of individuals with OUD use opioid-specific treatment) (Saloner and Karthikeyan, 2015; Wu et al., 2016). Still, help-seeking posts were generally rewarded by positive, encouraging, and insightful comments, consistent with results from other representative samples (Naslund et al., 2014). Further, we found that validated therapeutic principles were incorporated into as many as 95% of comments (Yalom and Leszcz, 2005). Comments in OFFopiates reflect hope, humility, and a common humanity in the face of opiate addiction.

To our knowledge, this is the first study to analyze social media output based on specific DSM-5 criteria for OUD. Contributors not only discussed the negative impact opiates have had in their personal lives and relationships, but also disclosed major symptomology used for DSM-5 diagnosis (e.g., the presence of withdrawal, cravings, tolerance, persistent unsuccessful efforts to cut back, failure to fulfill major obligations, and continued use despite negative consequences). Indeed, the majority of unique posters (47/73) in this study did disclose their sobriety status, many of whom identified as currently using or withdrawing. Furthermore, the devastating consequences of opiate abuse are palpable in many of the posts. Struggling with addictive behaviors, especially those that involve illicit drug use can be extremely stigmatizing and isolating; our findings importantly signal that online forums have potential for facilitating candid conversations about recovery efforts (e.g., withdrawal symptoms and relapse risks) that might otherwise be avoided.

Given that OFFopiates is marketed as a forum to help individuals who are recovering from OUD, it was not surprising that many contributors in our sample expressed interest in curbing opiate use. Of concern, however, only 15/100 posts made reference to seeking help by a medical professional. Potential barriers to care in our sample reflect findings from U.S. national surveys, including social isolation, stigma, and challenging social circumstances such as traumatic life events or disruptive home environments (Saloner and Karthikeyan, 2015; Wu et al., 2011). Additional barriers identified in OFFopiates included fear of retribution in their workplace, comorbid psychiatric disorders (e.g., depression, anxiety), and cost. In this setting, social media can be beneficial for providing a sense of belonging and means for coping with the illness experience.

Our findings suggest that a significant degree of social support does exist in OFFopiates. The most common form of social support observed in our sample was sharing of personal experiences. This data adds to a growing body of literature identifying online communities as platforms for supporting and engaging a high-risk group (Kaplan et al., 2011). For individuals with stigmatized illnesses such as addiction, anonymity may facilitate a more open and honest discourse compared to traditional in-person therapeutic models (Jourard, 1959; Smyth, 1998). As with most social media platforms, Reddit subscriber usernames are created by an individual who has the option to select a user name that facilitates anonymity; Reddit is also unique from other social media sites (i.e., Facebook, Twitter) in that users can generate ‘throwaway’ accounts as additional proxies of anonymity. Furthermore, we observed that very few of the comments (only 1%) contained bad/potentially harmful advice; this finding should work to alleviate concerns that online social support networks have the potential to do more harm than good among individuals who are seeking recovery from addiction.

Limitations of this study include analysis of only a portion of posts; the top (“hot”) 100 posts were extracted for analysis. Future studies may compile posts from multiple time points, given that Reddit is a constantly evolving platform and thus posts may vary day to day. Additionally, including posts that did not make it into the “hot” tab, may have allowed for a more representative sample. Although specific demographic data is not available for our data set, in general Reddit’s audience tends to be male, between the age of 18–29, and from both ends of the education spectrum [http://www.pewinternet.org/]. Thus, it is unclear how these results may be generalizable to a broader population, particularly women, and those who use other online social media sites.

5.0 Conclusions

Our findings from OFFopiates provide validation for non-curated online peer support communities. Data from our sample described specific OUD DSM-5 criteria, and unfettered comments were found to incorporate validated therapeutic principals. Additionally, our data suggests a potential need for treatment among those networking on this forum given that few posts mentioned involvement in formal treatment. The relatively common discussions about withdrawal symptoms and relapse risks indicate the utility of OFFopiates as a safe place where individuals can convene to network about their OUD struggles. To this end, we foresee that our results will stimulate useful discussions about leveraging social media to help those in-need while safeguarding privacy and ethics with regard to the feasibility of mining health data from information that people share publicly.

Highlights.

• An online community exists to support recovery from an opioid use disorder (OUD).

• Many individuals in this online community post criteria that align with OUD.

• Few individuals in this online community reported linkage with medical care.

• Supportive posts that encourage OUD recovery were vast within this online community.