The Lived Experience of Hepatitis C and its Treatment Among Injecting Drug Users: Qualitative Synthesis

Abstract

Hepatitis C virus infection is a stigmatized condition because of its close association with injecting drug use. There is a need to explore how people who inject drugs (IDUs) perceive hepatitis C, including in relation to treatment experience. We undertook a review, using a qualitative synthesis approach, of English-language qualitative research focusing on the lived experience of hepatitis C among IDUs. The review included 25 published articles representing 20 unique studies. A synthesis of this literature generated three interplaying themes: social stigma, biographical adaptation, and medical and treatment encounters. Interactions with health systems can reproduce stigma linked to drug injecting and hepatitis C, as well as trivialize the lived experience of diagnosis and illness. Hepatitis C can be biographically reinforcing of socially accommodated risk and spoiled identity, as well as disruptive to everyday life. We hypothesize hepatitis C as a liminal illness experience, oscillating between trivial and serious, normalized and stigmatized, public and personal. We conclude by emphasizing the disconnects between the lived experience of hepatitis C among IDUs and Western health care system responses.