To achieve hepatitis C viral (HCV) elimination targets set by the World Health Organisation, pillars of the HCV care cascade are often referenced to track progress. The aim of this qualitative study was to explore the limitations of the care cascade framework through the real-world accounts of ‘HCV journeys’ among people who inject drugs (PWID), with particular attention to the intersection of PWID agency and structural determinants in the healthcare system.
An in-depth analysis was conducted on five case studies to better understand participant experiences ‘behind the cascade pillars’. The five case studies were drawn from the ETHOS Engage cohort as exemplars of the real-world complexities of people’s HCV cascade journeys. Inclusion criteria for the qualitative study were participant has voluntarily signed the informed consent form, aged ≥18 years, HCV antibody positive by self-report, clients of selected sites participating in the ETHOS Engage cohort, and sufficiently proficient in English to participate in an interview. Thirty-four semi-structured interviews were conducted with participants who had received or had not received HCV treatment to identify barriers and facilitators to HCV care.
Participants ‘housed’ at the ‘HCV RNA diagnosed pillar’ (n = 2; Will; Julie) reported withholding their HCV serostatus in certain healthcare settings for fear that disclosure would lead to discriminatory decision-making from their treating physician. among participants who had completed treatment (n = 3; Corey; John; Nora) two reported still being unsure of their HCV status >6 months post-treatment. Ongoing feelings of frustration and shame were expressed in this ‘post-cure care pillar’ due to a perceived lack of quality care from clinic services and continued uneasiness when discussing drug use and reinfection while receiving opioid agonist treatment (OAT). Both case ‘categories’ described often tenuous therapeutic relationships with their physicians and recommended task-shifting to nurses and trusted case workers for ongoing care.
The care cascade provides a linear, two dimensional snapshot of clinical targets. Our findings illuminate structural barriers not visible behind its ‘static’ pillars, presenting insights into experiences among PWID otherwise dismissed as ‘disengaged’ or ‘lost to follow-up’.
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‘Not just one box that you tick off’ – Deconstructing the hepatitis C care cascade in the interferon-free direct acting antiviral era from the client perspective.
