STUDY: OUD Disclosure Can Be Helpful, or Devastating; Study Participants Offer Advice

Stigma—negative beliefs and misperceptions, based on misinformation or lack of information—has long plagued people with opioid use disorders (OUDs), whether they’re in treatment or not. A new study in the Journal of Substance Abuse Treatment highlights two troubling aspects of stigma: the reactions of others when people disclose their OUD history or current treatment, and the impact of the reactions on those who disclose.

Disclosure is a two-sided tool. It “can elicit long-term psychosocial outcomes that can be beneficial,” the authors explain. But if the reactions are stigmatizing, disclosure can “reinforce negative self-image and can further act as a barrier to treatment outcomes.”

The consequences of disclosing OUD treatment can be devastating. Stigma lurks, even in organizations known as support groups. Treatment disclosure in groups such as Narcotics Anonymous (NA) can lead participants to drop out of their group, or even quit treatment.

But devastating consequences aren’t inevitable. In this article, study participants offer advice and share what they learned during disclosure.

The Current Study

All participants in the current study came from UDisclose, a parent study that ended in May 2019. Those who were being considered as participants for the current study underwent two half-hour interviews, three months apart. The 52 participants selected for the current study were treated with either methadone (39) or buprenorphine/naloxone (BNX) (13).

The study used the Disclosure Process Model as a framework to characterize and compare reactions (see For Additional Reading).

Responses to Disclosure: Stigma, Standard Questions, Standard Responses

It’s no surprise that many on a medication for opioid use disorder (MOUD) feel highly stigmatized, the authors point out, “living with two concealable stigmatized identities”: a person in recovery, and a person in MOUD. As for methadone, is it an essential, life-saving medication, like insulin for a person with diabetes, or is it, as some have described it, a “crutch”?

Some study participants expected a less favorable response to a methadone disclosure than to a BNX disclosure, but that wasn’t the case. Stigmatizing reactions to disclosure were similar with the two medications.

Some methadone participants who anticipated a less favorable response hedged to avoid mentioning methadone by name:

“I get the Vivitrol shot.”

“I said I’m on Suboxone at a clinic and told her about the blocker in it.”

A participant told her father that she was taking Suboxone, and it helped her get off heroin. But her dad said she was stupid to get stuck on a new drug.

The usual types of questions came up during disclosure:

“When are you actually going to get clean?”

And the standard incorrect views surfaced:

People use treatment as a way to get high.

Taking medication means you’re not truly in recovery.

Recovery clinics drew some negative views:

…a seedy building with “a long line of people needing a fix.”

Some participants felt that taking BNX instead of methadone meant they were using the clinic “correctly.”

Surprises

One surprise: some participants taking BNX agreed with derogatory comments some disclosure recipients expressed about methadone clinics:

“…a sham used to keep people on drugs and money flowing.”

“…such a sad way to spend government money.”

…a place where the undeserving “go to maintain active addiction” instead of working hard toward stable recovery.

Another surprise: negative misconceptions from some employees at substance use disorder (SUD) treatment facilities. An employee whose mother worked at a methadone clinic explained how her bias affected him: “She knows about methadone but also nothing about it.” The problem was, he explained, she’d had a few bad clients “who abused [methadone], sold it, and stole from her, and now that’s her experience.”

Consequences of Misinformation

Situations, as they say, have consequences. Below are two examples.

Situation and Consequence

In this example, recipients believed misinformation about methadone and BNX. That belief affected the type of advice the recipients offered (they gave participants advice that conflicted with the treatment plan) and how the participants reacted to the advice.

Recipients:

“Suboxone is affecting your life and your body and making you sick.”

“You’re not really clean.”

“[Methadone is] a crutch and you’re still addicted.”

Participant:

“She wants me to hurry up and get off it (methadone), like now.”

Recipients’ two incorrect beliefs stand out:

  • Recovery means abstinence
  • Medications are a bandage for temporary use

Situation and Consequence

This example reveals lack of acceptance by support groups and failure to acknowledge participants’ achievements while in recovery. Although many participants found NA helpful, many others reported unfavorable experiences that led them to quit the group.

Some quotes:

From a participant who shared at NA about Suboxone: “They said, ‘You’re not really clean…you still have to put drugs in your system.’”

“…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.”

A participant was “embarrassed and ashamed.” Rather than “providing a supportive atmosphere of acceptance, NA made him feel “I had to hide a part of myself.”

Comment from the authors: “…in stark contrast to the support group’s commitment to unity, cooperation, and support, some participants felt NA minimized their recovery achievements.” Participants did not feel they fit into NA’s singular vision of recovery.

Participants’ Recommendations

Regardless of whether they were taking methadone or BNX, participants offered similar advice:

  • Be selective when deciding whether to disclose

Talk about your treatment only to “people who will be constructive for your recovery”

  • Full disclosure isn’t always necessary—or best

“There’s no reason to expose yourself to those stigmatized opinions if you don’t need to”

If holding back isn’t possible, have support systems—people who believe in you, to talk with after disclosure

  • Have resources available to show the benefits of your medication; printed material, list of websites
  • Work with your therapist to develop a game plan for a positive talk with a recipient

Four Ways to Manage Misinformation and Discuss Recovery

These four recommendations for managing misinformation and discussing recovery are key.

This specific advice from participants, the authors emphasize, can help dispel the fear that often springs up during disclosure. And it can facilitate positive skills, making communication more effective.

  • Be selective when you choose a recipient. Find someone with a positive mindset and focus on what the recipient needs to know to help in your recovery or treatment efforts—but don’t share if a recipient is unlikely to be supportive.
  • Alert friends or your therapist about your upcoming disclosure, and consider lining up help to manage possible distressing experiences after your disclosure.
  • Be prepared for the disclosure conversation. Have on hand printed materials that substantiate the benefits of your treatment. Have a plan for combatting misinformation. Have a goal in mind—how you hope to benefit from the conversation, or what you hope to accomplish.
  • Advocate for your own recovery. It helps minimize negative self-perceptions.

Interventions

Short-term interventions may promote ways to manage misinformation, helping individuals respond to inaccurate statements about medication use. Long-term interventions may target misinformation about methadone and BNX “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.”

Targeting misinformation has important benefits:

  • increases health literacy
  • reduces stigma
  • combats community ambivalence
  • promotes recovery

Summary

People react to disclosures of opioid use and treatment in various ways. Recommendations and guidelines based on participants’ experience, presented in this study, can help individuals in treatment as they respond to recipients’ statements and actions.

Reference

Brousseau NM, Farmer H, Karpyn A, et al. Qualitative characterizations of misinformed disclosure reactions to medications for opioid use disorders and their consequences [published online ahead of print, 2021 Aug 9]. J Subst Abuse Treat. 2021;108593. doi:10.1016/j.jsat.2021.108593

For Additional Reading

Chaudoir SR, Fisher JD. The disclosure processes model: understanding disclosure decision making and postdisclosure outcomes among people living with a concealable stigmatized identity. Psychol Bull. 2010;136(2):236-256. doi:10.1037/a0018193

Substance Abuse and Mental Health Services Administration. Medications for Opioid Use Disorder. Treatment Improvement Protocol (TIP) Series 63. Publication No. PEP20-02-01-006. Rockville, MD: Substance Abuse and Mental Health Services Administration, 2020.

SAMSHA. Medication Assisted Treatment for Opioid Addiction. HHS Publication No. (SMA) 09-4443. 2011;1-20.

Partnership for Drug-Free Kids. Medication-Assisted Treatment. An eBook for Parents & Caregivers of Teens & Young Adults Addicted to Opioids.

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