Table 2 Barriers inhibiting study recruitment and sample quotation

1. Eligibility Criteria

Suppressed HIV viral loads

People that are showing up to an HIV clinic even sporadically have a very high suppression rate. 85 to 90%, because the medicines have just gotten so much easier. It really is hard to find these folks if you are sitting in the clinic.

Consider broadening eligibility criteria to include individuals with unsuppressed HIV or drugs of choice in a specific community. Peer outreach workers or partnering with other organizations can be helpful recruitment opportunities.

Opioids not the primary drug

There’s not as many opioid users at least here as in other parts [of the country]. Among [our] population, [there is] more methamphetamine use.

2. Stigma

Fear of learning HIV status

The stories of people’s fears when we talk about their diagnosis experiences and we talk about their reactions and disclosures and all of that it’s like we’re back in the 80s, early 90s. Especially in [our rural community].

Ensure that staff are well trained on the stigma that patients feel and can respond in manner that makes them feel comfortable in the clinic.

Fear of others learning their HIV status

Because if you live in a town of a couple thousand people, it’s very ‘somebody that knows somebody that knows somebody’ sees you walking into this [HIV] clinic. This is why we have people driving several hours one way to come here. It gets incredibly difficult to even locate individuals who may be susceptible, who may be in need of MAT

Internalized stigma and self-shaming

It’s kind of this self-shaming thing like ‘I did it to myself, I deserve to have [HIV].’ There’s a lot of cultural stigma and shame surrounding HIV and Hepatitis C.…People often report their substance use and do not tell me that they tested positive for Hep C or HIV.

3. Research complexities

Lengthy procedures

The [patients] are [thinking], ‘I’m sitting here for three hours, I could be out on the street making money to get well.’ At this point a lot of them don’t even enjoy the high, but they have to keep using to not get sick.

Ensure that the research procedures are as streamlined as possible while providing adequate time to answer all questions and concerns.

Fear of research and outsiders

The older generation especially the older black men. Definitely. They are like … remember what happened … when they gave all those black men syphilis? How will I know you are not doing that?

4. Patient preferences

Treatment preference

I’ve had people who were randomized into treatment as usual [say] ‘I was looking forward to getting the injection’ and vice versa.

Provide all of the information to the patient about the pros and cons of each medication. Make sure they are comfortable with either study condition prior to randomization so that study resources are used for patients who are willing to follow through for either arm.

A lot of patients still view [buprenorphine] and methadone as opioids ... Once they understand what [XR-NTX] is, they don’t see that as a quote dependent drug. Some people actually preferentially desire to get onto [XR-NTX] …

Concerns about withdrawal

When I describe precipitated withdrawal, people say, ‘Oh, is that like what happens after I use [naloxone]?’ If they have ever done that they are petrified of using [XR-NTX] because they never want to feel like that again.

5. Social and structural barriers

Housing and transportation

[Patient] had housing issues and that seemed to take priority before being able to stop using because she couldn’t go to inpatient just yet because she didn’t feel secure with her housing situation.

The extent possible, assist patients with wrap-around services such as housing referrals or transportation services. Understand any criminal justice involvement and how to track them should they become incarcerated.

Mass transit in [our community] is not great. Buses run late, there’s lots of traffic. … you have to make so many connections and when you combine the amount of time and the amount [of] delays, it’s very hard for people to make appointments on time.

Criminal justice involvement

You could be sitting with them doing an assessment and then the next minute they walk out of your office and boom, they are arrested, you know, you-- it’s a revolving door.