Recruitment, enrollment and interviews with incarcerated participants

People who were incarcerated made up the patient sample, and they were recruited during two weekly orientations (when new detainees are instructed about the processes and policies of the jail) at the Middlesex County Jail. At the end of these orientations, research assistants (JR, JZ, or DB) described the study and asked if anyone would be interested in participating. Detainees interested in the research approached the researchers, who wrote down their names. The researchers then went to a private room, and asked the corrections officer to bring in people who had their name on the list, one by one. The corrections officer was not in the room during the interview. Research staff emphasized multiple times during the recruitment process, consent, and before participating in the interview, that participation was voluntary, and there would be no repercussions if the person decided not to participate. The study details were explained and there were opportunities for detainees to ask questions prior to giving their verbal consent. After consent was given, the study staff signed the consent form with the date and the time signifying that they received verbal consent from the participant.

Recruitment, enrollment and interviews with non-incarcerated participants

The Middlesex County Jail staff, including the clinicians and corrections administrators, were approached for participation via an email describing the study. If the recipient responded with interest, the researcher scheduled a time to meet with them privately at the jail. Community clinicians, public health and policy representatives, and people employed by pharmaceutical companies were identified and recruited as follows. Those known to the research team were contacted via email describing the study, and interviews were scheduled at their convenience and in their preferred location To facilitate adequate recruitment, all non-incarcerated stakeholders were asked to identify other individuals who would have insight on the topic being studied. This snowball sampling continued until representatives from each of the “P” groups had participated [20].

The study was explained prior to consent. The interviewer (JR, JZ, or DB) began with an icebreaker (see S1–S3 Files). Table 1 indicates the role of the participant and the “P” in which they were categorized. For readability and anonymity, we will refer to participants by their “P” group, with patients referring to the participants who were incarcerated.

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Table 1. 7 Ps: Study participation.

https://doi.org/10.1371/journal.pone.0250901.t001

Data collection

We developed two 30–45 minute semi-structured interview guides: one for people incarcerated in jail and another for other stakeholders. Both guides sought to explore approaches to improving the system of HCV care in the jail setting. These were pilot-tested by a research assistant (JR) in Tufts Medical Center’s Infectious Disease Clinic with patients who had previously experienced incarceration. The interview guide for people who were incarcerated focused on personal knowledge or lived experience with HCV and their perspectives on access to and quality of healthcare in the jails. The interview guide for people who were not incarcerated focused on access to HCV care, quality of healthcare, and payment for HCV care in the jail setting.

Three research assistants (two white women and one Black-Hispanic woman) trained in qualitative data collection (JR, JZ, DB) conducted the interviews. Regulations did not permit recording devices inside the jail, therefore interviewers worked in teams of two, one transcribing and the other conducting the interview and taking notes. Neither the incarcerated individuals nor the participants who worked in the jail were allowed to accept incentives. Interviews with participants outside of jail were audio-recorded (with the interviewee’s permission) and professionally transcribed. The interviewer took notes as well. These participants were compensated with a gift card ($50). Interviews were completed in English or Spanish, depending on preference of the participant.

Data analysis

Transcripts were analyzed using Dedoose 6.1.18, a web-based software program. After developing a preliminary deductive codebook for each of the two interview guides [21], the research team coded a subsample of interviews (JR, JZ, AGW) and revised the codebook to include any and all emergent themes [20]. This iterative process continued until the team had produced an exhaustive list of codes (see codebook). We analyzed data thematically, where frequency and co-occurrence of codes were used to collapse and expand codes iteratively until a core group of key themes emerged. We resolved discrepancies in coding using a comparison and consensus approach. After completing coding of both sets of data, the research team compared the themes from each to determine overlaps or points of divergence to highlight in the results. Analysis revealed that we achieved thematic saturation with both samples, suggesting that interviewing more participants would not have provided additional novel information.

Knowledge about HCV testing policies

Knowledge about HCV testing opportunities in jails varied, with several incarcerated people unaware that HCV testing is available on request in the jail. Of the 21 incarcerated patients interviewed, few (2/21) recalled being asked if they wanted HCV testing, and more than half (13/21) said they were not offered testing. One such patient said, “I don’t think I’ve ever been offered testing. It’s kind of weird that no one has asked. I probably should, just for the hell of it… It would be good to know.” Another reported only being tested for HCV in the jail, “I don’t know where I would go [for testing] if I were home. I’ve only been tested in jail.” A third echoed these themes, saying he may have been offered the test 5 years ago in jail, but he was not sure. He continued, saying even if they asked him to have the HCV test, he wouldn’t be interested because he needed to “learn” more about it. He said, “They need to tell me ‘it’s for this and that.’ They need to tell me about the complications.” There was also variability in clinician response, as one provider who worked in jail reported that HCV testing was not offered to everyone, while others said that it was offered at intake or sick call.

While many patients who were incarcerated had heard about HCV or heard rumors about other people having it, others were less informed. Those patients with less knowledge of HCV expressed more mistrust of the healthcare system and less interest in testing: “I heard [HCV] was something I don’t want. I was told it was an STD, but honestly I don’t know. I hear a lot of shit about shit and don’t believe it.” Several incarcerated patients felt HCV was primarily transmitted through sex, and many did not think HCV could be cured. One patient recalled, “I was tested for [HCV] in 2017. It was painless. I didn’t feel like I had control. I think they were testing everyone for it. It’s something you had to do.”

Stigma and deservingness

Opinions on the importance of stigma differed. Several participants (incarcerated and non-incarcerated) felt that HCV was not a stigmatized illness, including one policy maker who works in the jail, “years ago, when it came to HIV, people were reluctant to participate in HIV testing. It’s not the same with Hep C. There is no stigma surrounding Hep C and inmates.” One incarcerated patient said, “HIV is serious. Hepatitis C isn’t as serious. I have an uncle that died of HIV.” However, other participants discussed how stigma was a real barrier to getting tested and treated for HCV. One provider who was in recovery said, “Addicts are not, in their mind, good people, they’re weak, stupid, evil, mean, selfish… you know all those things. Which, unfortunately, many addicts have heard that so many times, that they start internalizing that.” A provider described the process of drawing blood in jail as negative with “phlebotomists who are very judgy and unkind and blame the patient when they can’t get blood from them [because of vein damage due to IV drug use]” or “really judgmental remarks… usually around drug use.” A product maker/pharmaceutical representative brought up that if a person who is incarcerated requested HCV testing, they might be targeted: “So, you know sex or doing drugs or sharing needles within the prison system… people are much more reluctant to ask for a test if they feel like they might get in trouble because when they say, ‘well, why do you need a test?’”

Many participants discussed the stigma around incarceration as impacting whether they deserved HCV care. One incarcerated patient said, “In jail they wouldn’t treat [HCV] as serious because people look down on inmates…. A white coat will offer more help than an officer, that’s my opinion. I’m a human like everyone else.” Another said, “Human beings deserve to be treated. They deserve to get treatment and move on.” When asked about what should be done if someone with HCV gets treatment, clears the illness and then is reinfected, a third incarcerated patient said “ew, if you got it twice you are just nasty,” but then said, “I think they should get treated again- because that’s kind of right… almost nobody deserves to have that or any disease.”

Several participants commented on how HCV was treated differently than other diseases. When asked who pays for HCV treatment for people in jail, one incarcerated participant said, “I don’t know. It’s not like the Cancer Treatment of America. You don’t hear about that.” A purchaser said, “So when they think about the cost of one course of sofosbuvir the way that they’re thinking about it is, ‘Okay, this Puerto Rican is costing us 16 grand,’ as opposed to, ‘Hey, we’re treating our inmate population and we’re eradicating this horrible disease.’” A policy maker said, “I say to folks, ‘Guys, every medication is expensive.’ That’s just the way that it is, you know. But we don’t hear about the cost of those other medications because somehow that illness is more socially acceptable.”

Impact of captivity and transience on HCV testing

Several participants (incarcerated and non-incarcerated) felt that jail was a good time to offer HCV testing, often referring to other tests they do in the jail like testing for HIV and tuberculosis, including a payer who worked in jail and said “If you come here, get tests, the test is confirmed… if you detox and re-evaluate life… it’s a good time in a sense that we have a captive audience.” The period of “sobriety” in jail was highlighted as an opportune time to initiate treatment.

The role of the jail as the sole healthcare provider for people who are incarcerated emerged frequently among the non-incarcerated stakeholders. A payer noted “The only access to healthcare that a lot of our indigent populations and substance abusers who are at the highest risk of being infected with hepatitis C… oftentimes is only when they’re in jail so I feel [testing for HCV in jail] is a necessity.” Transience was discussed several times in interviews as a barrier to HCV care, including one purchaser working in jail who said, “This is a transient population, it can be hard to follow treatment from start to finish since it takes 8–12 weeks.” A policy maker felt jail was the appropriate time to treat, since “It’s not that they’re transient in their time in jail, their entire lives are transient… You should treat as much as you can while you can.”

Impact of HCV testing on limited budgets

Although HCV should be treated “like any other ailment… like HIV, liver disease or cancer… the thing about Hep C treatment is that it’s expensive… jails have a fixed budget. 80% is fixed cost… payroll, food, keeping the lights on,” according to one payer. Another payer discussed the many complexities associated with HCV treatment in jails, from budgeting to logistics to staffing, and “how we figure out whose responsibility it is to make all of these things fall into place, so it’s a challenge and concern.” A policy maker highlighted the economic barrier of HCV testing and subsequent treatment in the jails, (which house people short-term), in comparison to the prisons who have long-term healthcare responsibilities, saying HCV treatment “is not only beneficial but it’s cost effective. The problem is cost effective for whom… if you’re only responsible for that person’s care for six months, a year, two years, three years, and then somebody else is going to be responsible for the cost of not doing something now, then it’s not cost-effective for you. It’s cost-effective for society. But not for you.”

Participants commented on cost of HCV treatment in the jail setting. One provider proposed that “health insurance should pay. MassHealth should pay too, either through taxes or the state budget.” A policy maker said “As soon as somebody becomes incarcerated, they’re the responsibility of the state. If that person is then released more than likely they will be on some MassHealth plan… if the state is going to pay for it one way or the other, why not make sure somebody’s starting, completing and getting all the proper follow-up.” The role of state government in financing HIV medication was discussed as an example by a purchaser: “I remember when we talked about… some of the medications that can make an impact, positive impact on people who have HIV… we looked at the cost of it and it was just staggering, but the state stepped up and gave us reimbursement for the HIV medication and it became just another medication that we gave.”

The role of linkage to care programs

One of the providers explained that they understood why providers in jail may be reluctant to test: “If you’re in a situation where you’re the only provider taking care of a lot of patients than it may be well, ‘okay if I test and find this [and] I’m not gonna be able to do anything about it, then what’s the point?’”

Linkage to care post-release was suggested as an opportunity to maximize testing during incarceration, and relieve the burden of treatment for corrections staff. Incarcerated patients were interested in linkage to HCV care after release: “I want to find out how to get rid of [HCV]… I’ll only be here a week or so, I’ll do it outside.” Another reported “There was no follow up after jail. They could have… told me my options, of what could have been done, instead of just saying I could get it treated told me how to go about getting treated, letting me know more about the treatment.” People who worked in jails agreed, saying “We link people with opioid use disorder to care. Now we do the same thing for mental health. But we’re not doing as good a job with people who have health issues. I think it would be good to introduce and link people to providers [on the outside].” One policy maker envisioned it as “drilling down to the level of getting someone an appointment, right. Here’s your first appointment at your provider in the part of the Commonwealth that you’re going to. That would make sense. You know, and just have as close to a warm handoff as you could.”

Additionally, improving communication between jails and the community was highlighted by providers because people working in the jails have limited access to prior testing, and sites on the outside may not receive healthcare information from the jails.