"Shaping the new freedom": A reflexive thematic analysis on patients' post cure needs after years of living with hepatitis C
Helen Guggisberg, Dunja Nicca, Anton Kohler, Philipp Bruggmann & Patrizia Künzler-Heule
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.
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
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.
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.
Guggisberg H, Nicca D, Kohler A, Bruggmann P, Künzler-Heule P.
"Shaping the new freedom": A reflexive thematic analysis on
patients' post cure needs after years of living with hepatitis C.
Swiss Med Wkly 2022; 152:.
journal paper/review (English)
date of publishing
Swiss Med Wkly (152/23-24)
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