“Shaping the new freedom”: A reflexive thematic analysis on patients’ post cure needs after years of living with hepatitis C

Abstract

BACKGROUND: Direct-acting antivirals present a treatment opportunity that provides high rates of sustained viral response even for people who have lived for years with hepatitis C virus (HCV) infection. While it is known that liver-related morbidity and mortality can be decreased and many symptoms reversed, this population's need for post-treatment professional support has not been extensively assessed. Therefore, our study aimed to describe the experiences of patients cured of chronic HCV infection and explore the meaning of these experiences regarding specific follow-up care needs within the context of the Swiss health system. METHODS: For this qualitative study, we applied a reflexive thematic analysis approach with a social constructivist orientation. Twelve participants shared their experiences of being cured and their needs regarding follow-up care. Subsequently, the data were analysed in an iterative process based on Braun and Clarke's six phases of analysis. RESULTS: In the overarching theme, participants summarised their new situation with the statement, “being cured feels like being released from a cage”. They experienced striking health improvements with overwhelmingly positive influences on their everyday lives. This experience was characterised for all participants by important changes on three levels. We categorised these in three sub-themes: a) “the ball and chain have been lightened”: this sub-theme illustrates the reduction of social limitations and emotional stress; b) “the gnawing at the liver has let up”: this signifies relief from physical symptoms and strongly improved well-being. And under the third sub-theme, “shaping the new freedom”, the participants described their new situation as a sometimes-stressful challenge because they had to reorient their self-management. They shared their concerns regarding the ongoing stigma of HCV infection, feeling insecure in their own health after being cured, and learning how to use their heightened sense of confidence and openness to enact behavioural changes that would improve their health-related lifestyles. CONCLUSION: The findings of this study provide insights into treatment experiences of patients cured of chronic HCV infection and the need for follow-up care even after successful virus eradication. The results can sensitise healthcare professionals to patients’ post-cure challenges and guide their care interventions. Some of these challenges, such as dealing with stigma, can be addressed during treatment; other needs, like providing motivation to engage in healthy behaviour, may warrant targeted follow-up.