Conceptualising hepatitis C stigma: A thematic synthesis of qualitative research

Stigma is an important element in the experience of living with chronic viral hepatitis B (HBV) and C (HCV), impacting healthcare access and uptake as well as health outcomes. Conceptualisations of stigma in research are, however, often assumed and implicit. This study aimed to synthesise and critically engage with the qualitative literature to provide an overarching conceptualisation of stigma as it pertains to viral hepatitis.

We critically reviewed qualitative literature that mobilised concepts or theories of stigma in relation to viral hepatitis. We searched seven electronic databases for peer-reviewed literature from 2000 to 2019. Given a dearth of conceptual literature on HBV stigma, we conducted a thematic analysis of concepts deployed to theorise stigma in relation to HCV.

We found 13 studies that conceptualised stigma in relation to HCV, yet none for HBV. We synthesise the analytical findings of these studies and explore how HCV is theorised in relation to four themes: 'identity', 'embodiment', 'institutionalisation', and 'structuration'. Taken together, these themes illustrate the way in which HCV stigma manifests as the confluence of normative assumptions of socially unacceptable practices relating to HCV, such as injecting drug use and sexual behaviours; attitudes towards socially excluded populations; and fears of contracting a contagious and chronic illness. As such, operating within political, social, and economic systems, HCV stigma can act to silence the needs of those with HCV through misrecognising the multifaceted identities of individuals with HCV and structural determinants of health. Stigma, which is built and perpetuated by institutional arrangements, as well as in social processes and policies, shapes deservedness to, as well as engagements with, health and social care.

While commonly employed as a framing concept, much research lacks explicit theoretical or critical engagement on how stigma is conceptualised. There is a tendency for qualitative, empirical research to focus on risk factors shaping individual behaviour change, rather than on risk contexts and socio-structural change. Approaches to address stigma in relation to HCV must consider how stigma operates throughout social processes and is embedded in systems of power and normalised in institutional operating systems.