- A Montreal study assigned patient navigators to 10 men released from prison with hepatitis C
- Access to hepatitis C care was found to be dependent on access to housing and social services
- Navigators’ knowledge and attitudes were more important to participants than lived experience
Initial infection with hepatitis C virus (HCV) can cause mild general symptoms or no symptoms at all. As a result, many people may not know that they have the virus. HCV infects the liver, causing inflammation in this vital organ. Over time, many years, HCV slowly degrades the liver, replacing healthy tissues with scar tissue. Gradually, the liver becomes dysfunctional, and symptoms such as persistent fatigue can appear. Eventually, other symptoms—such as internal bleeding, serious abdominal infections, difficulty thinking clearly and problems with memory (brain fog)—occur. When most of the liver has been replaced with scar tissue (cirrhosis) the risk of liver cancer rises significantly. If left untreated, HCV infection increases the risk of death.
HCV can be diagnosed with a simple blood test. Treatment is available that can be taken once daily for two to three months and results in high rates of cure (more than 95%) in most people.
The carceral system
In Canada, people who have been sentenced for less than two years are housed in provincial prisons. Some of these people are at risk for HCV infection. Although there are HCV care and treatment programs in prisons, research has found that many people with HCV are released into the community without such care and treatment.
Studies have found that after release from prison people with HCV face competing priorities, and this reduces their chances of successfully linking to general medical care and HCV care and treatment. According to scientists at McGill University in Montreal, the competing priorities can include the following:
- unstable housing
- insufficient social support
- experiencing stigma and discrimination when seeking healthcare
- resumption of substance use
Patient navigators
Patient navigators act as liaisons or bridges to healthcare systems for people with various conditions, including HCV infection. The navigators can help patients get appointments, accompany them to clinic visits, explain medical terms and diagnoses, assist them in the process of accessing subsidized treatment, connect them to social services and perform other tasks that can at times feel overwhelming and burdensome.
Although studies have found that patient navigators are helpful in HCV care, what is not known is which services they should focus on when working with people who have HCV who have recently been released from incarceration.
A study in Montreal
A team of researchers at McGill University in Montreal conducted a study to assess which issues acted as barriers to or facilitators of HCV care after people were released from prison. The researchers interviewed 10 men from Quebec’s largest provincial prison,
l’Établissement de détention de Montréal (EDM). These men had chronic HCV, and they all wanted and received patient navigators to help them with post-release care. Interviews were conducted between November 2022 and July 2024.
A brief average profile of participants upon entering the study (after release from prison) was as follows:
- age – 54 years (ranging from 32 to 69)
- 50% had completed high school
- age when first incarcerated – 20
- history of injecting drugs – 90%
- previously treated for HCV – 80%
- drug use after release from prison – 8 used non-injection drugs and 1 injected drugs
- unstable housing – 8 participants
Results
Researchers divided their findings into different themes; we will largely reproduce these themes in our report.
Health literacy, information and attitudes toward HCV treatment
According to the researchers, “for most participants, support from healthcare providers helped improve their health literacy and acted as facilitators to linkage to care.” They added: “Overall, most participants had a basic understanding of the virus, its modes of transmission, and long-term consequences. Most participants demonstrated an understanding of HCV as a virus which affected the liver and which was primarily transmitted through blood, leading to potentially severe outcomes such as cirrhosis if untreated. This basic understanding better equipped participants to link to HCV care post-release.”
Some participants underscored the presence of educational materials at clinics and shelters that helped them learn about HCV. One participant commented on the value of educational materials, saying: “Knowing that there are options available and that I don’t have to face this for a long time makes me feel like I have more time. It motivated me to go through all the steps [involved in care and treatment].”
The researchers noted that several participants had difficulty accessing information because they did not have regular internet access or they had issues with health literacy.
Motivation for HCV treatment
Some participants disclosed that they were not initially motivated to engage in HCV care and treatment because they assumed that their symptoms had other causes or they had competing priorities, such as finding stable housing. However, multiple participants disclosed that deteriorating health forced them to become engaged with care.
One participant stated: “I had been feeling very unwell over the past few months, feeling tired, [enduring] abdominal pain, and a general sense of malaise. Initially I brushed it off, figured it was because of my conditions of living on the streets. But, as time passed, this feeling didn’t stop and even worsened. I thought this was going to be the rest of my life…I started to think something was wrong, but I didn’t want to tell anybody. It set off alarm bells in my mind.”
Another participant stated: “I knew that seeking hepatitis C care was essential not only for my own well-being but also to break the cycle of illness and pain that had plagued me for so long.”
One person told the researchers: “I wanted to show myself and others that I could turn things around. Getting rid of this disease was one of those steps.”
Overall, the researchers found that participants had multiple reasons for getting HCV care and treatment, including “to improve their health, prevent transmission and overcome their past—as it relates to breaking free from repetitive cycles of illness, pain and substance use.”
Competing priorities and intersecting difficulties
Participants found that experiences in their life tended to intersect and compound the difficulties they faced. The researchers stated: “For instance, untreated mental health issues, like bipolar disorder, often led to impulsive actions that resulted in reincarceration, complicating efforts to seek healthcare post-release.” One participant found a lack of support around his bipolar disorder, which made it difficult for him to seek care. He stated: “Well, I have bipolar disorder […]. I need help sometimes and get frustrated when nobody helps me. I can’t help it. I feel like nobody is listening to me. And then I get impulsive and destructive. And that’s why I got back in there [prison].”
Another participant stated: “I did hesitate, to be honest. Living on the streets with hepatitis C and struggling with [my mental health issues], it’s easy to feel overwhelmed and lost in the shuffle. There were times when I questioned whether I was worthy of receiving care or if I even deserved to get better. The stigma surrounding homelessness and mental illness can be incredibly isolating, and it made me doubt whether anyone would take me seriously or offer me the help I needed. Plus, the thought of facing my diagnosis head-on was terrifying […]. But ultimately, I knew that I couldn’t continue living in denial. I had to confront my illness and take necessary steps to get better, for my own sake and for the sake of those who cared about me.”
The most common priority among the participants after release from imprisonment was finding stable housing.
One person stated: “Transitioning from life in prison to life on the streets was like stepping into a whole other world. Suddenly, I was faced with a whole new set of challenges and barriers to accessing care. From finding a stable place to sleep to figuring out where to get my next meal, just getting through each day was a struggle.”
Communication
Participants’ ability to communicate with healthcare providers and convey their issues helped to foster trust and cement their connection to care.
One participant stated: “Honestly, I was still afraid to tell the nurse at prison at the beginning that I already had hepatitis C. Once she did my [blood tests] though, it was helpful. She listened to what I was facing and asked what I wanted.”
Another participant said: “When it comes to my health, I know I can ask the nurse for help. She gives me straight answers, and I don’t have to worry about getting bad advice.”
Transportation challenges
Travel from to the HCV clinic was identified as a barrier to care by many participants. One person said: “I had to travel all the way to [a municipality in Quebec]. I have no car, and I don’t live [in this municipality], never have lived there. She [the family doctor] was hard to access.”
One participant noted that “if the shelters also had onsite testing, education and treatment for hepatitis C, [this would remove] some of the barriers with transportation and communication [with clinics].”
Reincarceration
According to the researchers, “some participants who had been reincarcerated reported a lack of follow-up and coordination from prison-based healthcare providers. This lack of continuity of care acted as a barrier to ongoing HCV care engagement.”
In the community
According to the study team, “following release, many individuals face significant challenges with their reintegration back into community. These often include barriers accessing healthcare services, housing and social support. Community-based organizations (CBOs) play a critical role in addressing these challenges by providing a wide range of services tailored to individuals’ needs. Post-release, participants often accessed CBOs that included crisis prevention centres. These centres provide immediate support and interventions to individuals in distress, including mental health services, substance use counselling and emergency shelters. Other CBOs focus on long-term reintegration, offering services such as social work support, legal assistance, housing and healthcare access. CBOs are particularly valuable in circumventing barriers such as stigma, transportation issues and lack of trust in formal healthcare systems.”
Policy issues – system-level services
Difficulty accessing stable housing was an issue that came up repeatedly in interviews. Another issue was how challenges intersected and made access to care difficult. In addition to housing, people need wrap-around services.
One person stated: “One major barrier that needs to be addressed is the lack of stable housing. Without a permanent address, it is incredibly difficult to access healthcare services and continue in treatment. I would suggest expanding affordable housing initiatives and supportive housing programs that target people experiencing homelessness and health conditions like hepatitis C. I know after I complete this treatment and I am no longer eligible to stay at the [crisis prevention centre], I will be back on the streets. They try to help you find an apartment, but the waiting lists are long. I’ll be back on the streets or back in prison […]. We need more money, more funding for mental health and [addiction recovery] programs, [as this would] help address the issues that lead to homelessness.”
It is obvious that providing housing is vital and one of several steps to improve the health and well-being of former prisoners. It also reduces the burden on emergency services and unnecessary interaction with the criminal justice system.
Patient navigation services
All of the participants underscored the importance of having patient navigators to help them access care and treatment.
One participant stated: “I’m going to follow [the patient navigator], because I don’t know anything. I have trouble writing and reading, so I need an advocate.”
Another participant said: “I’ve been on edge, I’m scared shitless of doctors, damn it! It is because [the patient navigator was with me] that I’m still here, because otherwise, damn it, I would have fucking quit [trying to get treatment] a long time ago.”
Participants identified aspects of patient-navigation support services that greatly helped them access care, such as transportation, housing and referrals to other services. The researchers stated that “several participants pointed to the importance of the pre-release discharge appointments, organized by the patient navigator, as a facilitator to HCV care following release.”
One participant stated: “I appreciate [that the patient navigator] helped to set up my appointments, making sure I didn’t fall through the cracks.”
Another person said: “[The patient navigator] took the lead. Then, I’m not even tempted to make the appointment, you know, it’s fatigue, too, that sets in. anxiety you know? Sometimes I don’t feel like doing anything anymore…”
One participant said: “As someone who was struggling with mental illness and homelessness, I often felt stressed and unsure of where to turn for help. Having someone who could have reached out to me, provided information about available resources, and helped me with everything in the process of accessing care after prison would have been helpful…. I appreciate that the patient navigator had been able to accompany me to appointments and provide emotional support, it made the experience feel less long […]. Having a dedicated patient navigator who could guide me through the process and offer ongoing support made a world of difference in my journey towards getting hepatitis C care.”
According to the researchers, “almost all participants illustrated how the patient navigator fostered a relationship based on trust, empathy and free from judgment in the process of linkage to care. Participants expressed gratitude for the comprehensive and reliable care they received by the patient navigator. Participants felt heard and found their relationship with the patient navigator particularly nurturing, in contrast with the punitive carceral environments from which they emerged […].”
Addressing multiple needs simultaneously
The researchers noted that although “health interventions, such as HCV treatment, were viewed as key to recovery and self-reinvention […], most people released from prison may not link to care without first ensuring that their primary and basic needs (housing, substance use treatment) are met, underscoring the importance of simultaneously addressing competing priorities at the time of release with any intervention that seeks to improve linkage to care. “
The researchers stated that their findings suggest that reintegration of former prisoners into the community “will likely require individualized and integrated approaches to meet the needs [of this population] and require collaborations between health and long-term care, public health, housing, social assistance and other community [services].”
Back to patient navigators
The researchers noted that patient navigators would likely benefit from “wholistic training that extends beyond pre-release discharge planning and transportation to include [providing] assistance with social services.”
According to the researchers, “interestingly, peers were not perceived by most participants to be facilitators to linkage to HCV care, implying that lived or living experiences [in patient navigators] may not be critical for improving linkage to care following release from prison.”
The researchers noted that “participants emphasized the importance of HCV knowledge and a genuine willingness to help others who were more disadvantaged. Our findings suggest that patient navigators without lived experience may foster equally meaningful relationships with patients and prior experience with HCV or incarceration should not be considered a pre-requisite for successful patient navigation interventions.”
Bear in mind
The study only enrolled 10 participants, but it was not easy to find volunteers who were willing to disclose personal aspects of their care to researchers. What’s more, the researchers’ interviews were rich in details that could be useful in helping to shape the delivery of future services.
It would have been interesting to interview people who left prison but who did not link to care to find out why this was the case. However, the researchers found it extremely difficult to locate such people.
Future studies of people who have left prison need to include women to find out their needs for patient navigation.
If Canada is to make progress against HCV, more funding, coordination and provision of services that meet the needs of people with HCV are needed.
—Sean R. Hosein
REFERENCE:
Kronfli N, Mambro A, Riback LR, et al. Perceived patient navigator services and characteristics to address barriers to linkage to hepatitis C care among people released from provincial prison in Quebec, Canada. International Journal of Drug Policy. 2024 Nov; 133:104624.