Introduction

High levels of undiagnosed and untreated Hepatitis C Virus (HCV) infection exist in prison populations globally[1–3]. As a result of the ongoing criminalisation and imprisonment of people who inject drugs (PWID), the main risk factor for HCV infection in prisoners is injecting drug use (IDU)[1,2,4]. An estimated 25% of the global prison population has been exposed to HCV[1]. Prison is a critical setting to access HCV infected PWID and provides an important public health opportunity to manage this epidemic.

HCV screening and treatment in PWID and prisoners is low (9%-12%)[5–7]. Barriers and enablers to engagement in the HCV care continuum have been identified in both groups[8–10]. Reducing the pool of HCV infection in both prisoners and PWID requires increasing the proportion engaging in all aspects of the HCV care cascade and understanding the challenges to screening, linkage to care, treatment and prevention experienced by those infected. The availability of highly effective and tolerable direct-acting antiviral (DAA) treatments have made HCV infection curable and have removed many of the barriers associated with interferon-based treatment regimens [11,12].

Many jurisdictions are scaling up HCV screening and treatment in PWID and prisoners with a view to achieving the WHO target of eliminating HCV infection as a major public health concern by 2030[11,13,14]. Evidence has demonstrated that “treatment as prevention” in both groups is cost-effective and an achievable HCV public health strategy[7,15,16]. Studies are reporting near or micro-elimination of HCV infection in certain communities and prison settings[17–19]. Despite having the tools to cure and prevent HCV infection and the optimism and enthusiasm brought by these reported successes, many countries, including Ireland, struggle to expand HCV care to prisoners. There are no Irish prison-based needle syringe programmes (NSP) but methadone maintenance treatment (MMT) is available at all prison locations in the Republic of Ireland.

There are over 3,500 persons incarcerated in Ireland on any given day with an annual turnover of over 7,500 unique prisoners[20]. The most recent national estimate of HCV prevalence in Irish prisoners is 13% with significant inter-prison variation related to levels of PWID incarcerated at the prison location[21]. Recently published national screening guidelines recommend HCV screening for all prisoners and national HCV treatment guidelines support the treatment of all HCV infected patients with DAA[22,23]. In-reach hepatology services are provided at three of the 12 Irish prisons. The Irish National Hepatitis C Treatment Programme (NHCTP) have identified prisons as key locations to identify and treat those who have not been referred to, or engaged with community HCV care[24].

A small number of studies have reported on the lived experience of HCV infected PWID in the community[25–27]. Previous studies have reported on barriers, enablers and motivators to prisoners’ engagement with HCV care[28–30]. To our knowledge this is the first study to report on HCV infected prisoners’ experience of the entire HCV continuum of care, from infection to cure, both in the community and prison. The study aims to collect and analyse prisoners’ narratives of their HCV journey which will inform HCV care delivery to this marginalised and underserved group, nationally and internationally.

Materials and methods

This study is reported according to the Consolidated criteria for Reporting Qualitative research (COREQ). Ethical approval was obtained from the Mater Ethics Committee as part of the Seek and Treat component of The European Hep Care Project and supported and endorsed by the Irish Prison Service’s Ethics Review Committee[31].

One-to-one, in-person and in-depth semi-structured interviews were conducted in a purposeful sample of 25 prisoners identified as having untreated active HCV infection and offered DAA treatment during their current prison sentence. Sampling was purposeful aiming to maximise variation in age, country of origin, liver disease stage, HIV co-infection, stage of treatment including treatment deferral (DAA) and non-completion (interferon-based). Three selected prisoners refused to participate, two due to family visits and one due to a court appearance. Data was collected from July-November 2018 at Mountjoy Prison, an all-male medium-security prison located in Dublin, Ireland. A data collection tool (Tables 1 and 2) and interview guide (S1 File) was designed by the research team and included questions related to all parts of the HCV treatment cascade including HCV acquisition risks. The interview guide covered the following themes: HCV journey in the community (risk behaviour, diagnosis and engagement in HCV care), barriers to community HCV engagement, impact of HCV infection on health and quality of life, description of prison HCV journey (both current and previous incarcerations), the experience of treatment, the impact of treatment on health and wellness, concerns about re-infection and the positives and negatives of prison based HCV care. Informed consent was sought from interviewees prior to study participation. Participants were assured of confidentiality, anonymity and the ability to withdraw from the study should they wish. Prisoners were reassured that refusal to participate or their withdrawal from the study would not impact their medical care. No financial inducement for study participation was offered. The interviews were conducted by the lead author DC, in a private consultation room at Mountjoy Prison and lasted an average of 35 minutes each. DC is the addiction specialist doctor at the study location and was known and provided clinical care to all the research participants. Demographic data was collected on a standardised data collection form by the interviewer prior to starting the in-depth interview. Digital recordings of the interviews were made and were later transcribed verbatim for data analysis and destroyed following transcription. Transcripts were coded for anonymity and following the removal of any personal identifiers stored on a password-protected encrypted hard drive. Demographic data was anonymised and uploaded to an encrypted Excel sheet using Microsoft word. All participant data was stored in accordance with Irish and European data protection laws. Statistical analysis on collected demographic data was performed using the Statistical Package for Social Science (verison23). Data is primarily expressed as means (SD) or n (%).

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Table 1. Description of study participants.

https://doi.org/10.1371/journal.pone.0222186.t001

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Table 2. Demographics of study participants in Mountjoy Prison, Ireland (September 2018).

https://doi.org/10.1371/journal.pone.0222186.t002

Transcripts were imported into QSR International’s NVivo 11 software (NVivo qualitative data analysis Software 2012) for coding and thematic analysis following a grounded theory approach [32,33]. This approach was chosen because prisoners are considered a hard-to-reach population and their experiences of HCV care are poorly understood and rarely reported in the published literature [34,35].

Thematic coding comprised four stages, data familiarisation, initial low-level indexing of collected data, second level line-by-line open coding concentrating on the generation of data-driven categories and subcategories and finally focused coding involving refining and mapping second level codes within and across categories[33]. The thematic coding was revised with each analysis of the interview transcripts and data collection and analysis ceased when thematic saturation was achieved (agreed by researcher 1 and 2). Illustrative quotes from the interview transcripts supporting the thematic analysis are included and are reported using an assigned pseudonym and the participant’s age.

Results

A total of 25 male prisoners participated (Table 1). The mean age of the study population was 39.5 years. Participants were incarcerated from an early age (mean = 18.3 years), experienced multiple incarcerations (mean = eight) and spent over a decade in prison (mean = 12.5 years). All participants reported a history of IDU. Two patients were co-infected with HIV infection, 10 had completed treatment with sustained virological response (SVR), three completed treatment and were awaiting 12-week post-treatment bloods (i.e. SVR12), seven were on treatment and two had deferred treatment at the time of their interviews.

Two participants had a period of community release during their current sentence (revoked temporary release (TR)) and their experiences of community release are included in the narratives. All participants had a history of sharing drug-taking paraphernalia in the community. 72% of the study cohort had a history of MMT and had spent almost a decade (9.2 years) on this treatment. (Table 2)

The following themes emerged from analysis of the data: medical and social factors influencing engagement in HCV care in the community, adverse impact of HCV on health and wellness, positive experience of prison life and health care, the transformative clinical and non-clinical changes associated with HCV treatment and cure and the reality of community release. The study generated a substantive theory of the need to increase the importance of HCV care among the routine competing priorities associated with the lives’ of PWID.

Discussion

The study reports unique findings from a qualitative study exploring prisoners’ experiences of their HCV journey from treatment to cure including: the experience of stigma and shame, the lack of relevance and importance assigned to HCV infection, competing priorities in the community, stability of prison life, trust in the in-reach hepatology services, ease of treatment and transformative clinical and non-clinical outcomes including increased self-esteem, commitment to living a drug-free lifestyle, increased confidence and self-worth, identity and lifestyle changes with the hope of social re-inclusion.

The barriers of knowledge deficit and fear of treatment described in this study have been reported previously[8,26]. For the study participants these were now historical since their experience of DAA treatment was less onerous and simpler than expected. These historical legacies of fear of treatment and its side effects still prevail and require interventions that increase information among high-risk groups. There is evidence that prison and community peer workers, in particular, those who have completed treatment, can increase uptake in HCV care and are seen as credible sources of information by prisoners[36,37]. The use of peer workers also fits with treated prisoners’ wishes to give back to their communities by sharing their experiences and encouraging and supporting others to engage with treatment.

The identification of stigma as a major barrier to PWID and prisoners engaging in healthcare, including HCV care, has been previously reported and was a consistent and repetitive theme across all narratives[8,10,38]. A number of prisoners who had successfully completed treatment still felt “contaminated”. The ongoing presence of HCV antibodies, even after treatment, can be confusing and in general, many cured patients still report having HCV infection[39]. This potentially maintains the stigma associated with HCV despite the patient successfully completing treatment[26].Using the language of cure and clearance may have a positive impact on prisoners and enhancing surveillance data to include more precise serological markers (HCV RNA status) may increase the understanding among those infected and the general public of the different stages of HCV infection[40]. In the long-term this may reduce the stigma linked with HCV infection with a greater understanding that being HCV RNA negative is indicative of cure and the ongoing presence of HCV antibody is historical. The stigma described by these study participants was not only linked with HCV infection and its association with IDU, it was also linked to poverty and a lifetime of marginalisation. Repeated incarceration from an early age was characteristic of this study cohort. Ongoing criminalisation of drug users ensures that this cycle continues and that our prisons remain overcrowded with the poorest and most marginalised in society[41–43]. Challenging existing drug policies of criminalisation and the ineffective “war on drugs”, is critical to tackling communicable diseases in prisons. At a broader level we need to support a range of public health policies (e.g. access to medical care including harm reduction services, housing and education) that improve the social and health inequalities experienced by many marginalised populations including prisoners[43,44].

It is recognised that in-reach hepatology nurses are a facilitator to HCV treatment both in community and prison settings [25,45,46]. A positive therapeutic relationship, based on trust and familiarity, increases treatment uptake and patient’s satisfaction and understanding of treatment[27]. Concerns have been expressed about how the ease of DAA treatment may erode some of the non-clinical benefits of HCV cure that were associated with interferon-based therapies[25]. The reduced clinical supervision required for DAA reduces nurse-patient contact and often eliminates the need to address the psycho-social issues that characterise prisoners’ lives[25]. This may impact on the therapeutic relationship between patient and treating nurse and while treatment may achieve HCV elimination, it may not address the other complex issues that can influence a return to drug use and drug-related risk behaviour.

The narratives collected in this study reveal the complex and overlapping relationship between the participants’ drug dependence and HCV journeys. All study participants had a history of IDU and all but one felt they had acquired HCV through the sharing of drug taking paraphernalia. Similar to other studies, active drug dependence was identified as a barrier to HCV care uptake and when present was prioritised among the many competing priorities[26,27]. Readiness is seen as an important factor in patient’s decision to engage in treatment[10]. This concept is closely linked with the cycle of change that underpins many peoples’ understanding of addictive behaviours and their treatment. [47]. Participants identified that achieving drug stability was a key priority and when achieved allowed them to contemplate addressing other issues including HCV care. While participant readiness was identified as a key factor to initiate in HCV therapy, practitioner support for engaging PWID into HCV-related care and structural support of PWID receiving access to reimbursed DAA therapies will also be needed to facilitate HCV treatment uptake among PWID[48,49]. The stability of prison life and access to addiction treatment, in particular MMT, and trusted healthcare further facilitated successful engagement in HCV care.

The clinical and non-clinical benefits of HCV treatment have been previously described[16,25,50]. This study reports similar outcomes including: improved energy, sleep and mood, reduced pain, sweating and abdominal swelling. These changes were associated with significant non-clinical transformations including increased self-esteem, self-confidence, sense of identity and a commitment to drug stability and not returning to prison. Linked with these changes was a hope of social re-inclusion, a return to work, family and community life and commitment to give back to their community by sharing their experiences to help others. There is potential to utilise this social capital for HCV prevention and strategy level by engaging treated prisoners in peer support networks and as recovery ambassadors and coaches (a non-clinical person who supports others recovering from drug dependence)[51,52]. It is important that expectations are managed since many challenges will still remain.

This study highlights the difficulty in maintaining stability on release. It is recognised that transition back to the community post-release is a challenging and high-risk period for prisoners[53–55]. It is also crucial to the management of HCV with linkage to care, addiction treatment services and harm reduction services a priority[53,56,57]. Return to homelessness and high-risk drug use characterised the experience of the two participants who had been released during their present sentence. These findings underscore the need for support on release and a commitment to addressing the social issues including homelessness experienced by prisoners released back into the community.

This study generated a substantive theory of increasing the importance of HCV care among the routine competing priorities associated with the lives of PWID. Reducing the impact of the many medical and social factors that impact PWID, can change the priority given to healthcare, including HCV treatment, in their lives[10,26]. This study identified drug dependence and homelessness as priority issues and the stability of prison life provides the opportunity to address these. Drug dependence, unemployment and homelessness have previously been identified as factors that impact negatively on the health and wellness and ability of PWID and released prisoners to access health care[58,59]. Homeless and marginalised people’s healthcare usage is characterised by delayed presentations, low usage of primary and preventative services, high usage of hospital emergency department (ED) and inpatient services and low usage of hospital outpatient department[60,61]. Recognising the competing priorities in the lives of HCV infected people should inform policy, health care delivery and HCV management. Providing additional supports alongside HCV treatment to address these complex needs could improve treatment uptake and outcomes. Providing HCV treatment at locations were HCV infected people attend for other health and social care needs (including prisons) could have a further positive impact on HCV management. The management of psycho-social and other health care needs (including addiction and mental health) often provides the time and capacity for PWID to manage other health care needs (including HCV care). Increasing the importance of health care among these challenges has the potential to increase uptake in HCV care. The substantive theory generated from this study can also inform further research on identifying barriers and facilitators to HCV screening and treatment uptake among PWID and prisoners.

The strengths of this study are the representativeness of those who participated. The one-to-one methodology allowed participants to reveal their HCV narratives in a private and confidential forum. A further strength of this study is the population studied. Prisoners are considered a hard to reach group and are rarely reported on in the published literature. There are a number of limitations to this study including the single gender and location of the study design. The interviewer was known to all the prisoners and provided addiction treatment to them during this or previous sentences. This may have prevented full disclosure and a biased narrative. Reversely, participants may have provided a more open and honest narrative to a researcher who was already known to them and who they had an existing therapeutic relationship with. This study did not analyse differences by treatment category and persons who have yet to receive treatment might have barriers that were not experienced by persons currently on treatment. Further research is warranted in this area.

Conclusion

This study found that HCV infected Irish prisoners are characterised by early age of IDU (18.2 years) with high levels of needle sharing (72%) and drug paraphernalia sharing (100%). They are incarcerated from an early age (18.3 years) and experience repeat incarcerations, spending most of their adult lives in prison. Lifelong competing social and medical factors impact on their ability and willingness to engage in HCV treatment. The stability of prison life and access to familiar and trusted healthcare, in particular, in-reach hepatology nurses facilitated engagement with HCV care. Many HCV-infected prisoners have the disease for over a decade and suffered many associated physical and psychiatric morbidities. These were often only recognised by their improved wellness on the successful completion of treatment. Prisoners found DAA treatment easy to manage and describe a range of associated transformative non-clinical outcomes including: increased self-esteem, increased confidence and self-worth. These changes were often linked to a commitment to a drug free lifestyle and preventing HCV re-infection. Many expressed a hope of social re-inclusion including a commitment to engage with peers to educate and support them through treatment. Prison release is a high-risk and critical time for HCV infected prisoners who return to the competing priorities of community living. This is often associated with relapse into drug dependence and homelessness which quickly erodes the benefits achieved while incarcerated. Community support structures for recently released prisoners are lacking and this high-risk period for overdose deaths and HCV acquisition requires further research. The relevance of many of the themes identified in this study will reduce with the increasing commitment to HCV treatment delivery. However, the systemic issues of stigma, marginalisation, social and health inequalities and ongoing criminalisation of drug users will remain and will require Trojan efforts by many—including policymakers and politicians—to make meaningful change to those affected.

Supporting information

Acknowledgments

The authors would like to acknowledge our colleagues at the Irish Prison Service and HepCare Europe, Mater Hospital for their support in conducting and completing this research. We would also like to acknowledge and thank the prisoners who participated in the study.