Hepatitis C in a new therapeutic era: recontextualising the lived experience

David Whiteley, Anne Whittaker, Lawrie Elliott, Sarah Cunningham-Burley

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Abstract

Aims and objectives
To explore the experience of adults living with hepatitis C in a new era of interferon-free treatment.

Background
Hepatitis C is a leading cause of morbidity and mortality worldwide, posing a significant challenge to global public health. Historically, the treatment of hepatitis C was poorly efficacious and highly demanding; however, more effective and tolerable therapies have become available in high-income nations in recent years. This is the first study to explore how these significant developments in the treatment of hepatitis C may have influenced the experience of those living with the virus, and their understanding of the disease.

Design
A qualitative study underpinned by social phenomenological theory.

Methods
Data were generated through semi-structured interviews with a purposive sample of 20 hepatitis C positive adults living in a large city in Scotland.

Results
Thematic analysis identified three overriding themes. “Positioning hepatitis C” illustrated how the disease was understood within wider sociocultural, medical and politico-economic contexts. “Beyond a physical burden” emphasised the emotional aspect of infection, and “a new uncertainty” revealed participants’ cautious response to the advances in hepatitis C therapy.

Conclusions
Interthematic discourse portrayed the new era of hepatitis C treatment as holding little sway over constructions of the illness, as narratives resonated with previous studies. Such unmoving “lay” understandings of hepatitis C may pose potential barriers to the new therapeutic era from reaching its full potential.

Relevance to clinical practice
How people living with the virus perceive and understand hepatitis C can have an adverse impact on their engagement with care and treatment. Whilst global medical discourse eulogises the arrival of a new era of therapy, there remain significant challenges for nurses engaging those with hepatitis C in therapeutic pathways.
Original languageEnglish
Pages (from-to)2729-2739
Number of pages11
JournalJournal of Clinical Nursing
Volume27
Issue number13-14
Early online date23 Oct 2017
DOIs
Publication statusPublished - Jul 2018

Keywords

  • direct-acting antivirals
  • hepatitis C
  • interferon-free treatment
  • lived experience
  • social phenomenology
  • thematic analysis
  • treatment rationing

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