“Like a pickle that’s been unpickled”: Emotional, identity and behavioural transformations throughout hepatitis C treatment

Abstract

Background Little is known about the emotional experience and benefits of undertaking direct acting antiviral (DAA) treatment for hepatitis C. A better understanding of individual treatment outcomes can inform acceptable treatment delivery and promotion. We aimed to explore participant-perceived emotional benefits and transformations throughout DAA treatment among people who inject drugs, who were initiating treatment. Methods Participants were recruited from either a community based clinical trial or community health clinics. Semi structured interviews were conducted with each participant before, during and following treatment. Interviews focussed on treatment perceptions, physical and mental wellbeing and modifiable health behaviours. Interviews were recorded, transcribed verbatim and thematically analysed. Participant and cohort matrices were produced to assess at which time point themes were present and whether themes changed or remained stable over time. Results This paper presents analysis from 19 participants interviewed between 2017–2019. Most participants were male, with no or mild fibrosis. At baseline, all but one participant had injected drugs in the past month. Three themes relating to the emotional wellbeing and behaviour change described a common treatment experience; ‘hopes for better wellbeing’, ‘lifting the weight’ and ‘closing the chapter’. Participants were hopeful treatment would improve their emotional wellbeing. Hopes were actualised during treatment as participants began to feel uncertainty and stress easing. Completing treatment improved some participants perceptions of self. Some participants consciously changed their injecting behaviours during treatment. Conclusion Undertaking and completing treatment was an emotionally and behaviourally transformative period. Participant perceived benefits should be used to inform how treatment benefit is conceptualised and how treatment is promoted in primary care settings.