Recontextualising the lived experience of hepatitis C and its treatment

Research output: ThesisDoctoral Thesis

Abstract

BACKGROUND: Rapid advances in the treatment of the hepatitis C virus (HCV) have been witnessed in clinical practice over the last five years. Pharmacological developments have ended the reliance on the drug interferon-α as a component of successful therapy, heralding the dawn of a new era in the fight against the disease. How this new era is being understood and experienced by those individuals living with the virus is currently unknown.
METHODS: A purposive sample of 20 individuals participated in face-to-face semi-structured interviews exploring their experience of living with HCV. Eight of these participants were interviewed again following a period of interferon-free treatment. All interviews were conducted between June 2015 and March 2016. The interviews were transcribed verbatim and explored using thematic analysis, underpinned by social phenomenological theory.
RESULTS: Analysis of the corpus of data resulted in three overarching themes entitled ‘positioning HCV’, ‘beyond a physical burden’ and ‘reconstructing uncertainty’. These themes offer original insight into how this new era of therapy is being realised by those living with the virus. The experience of interferon-free treatment was also explored through the narratives of those individuals who participated in a further post-treatment interview. Three further themes entitled ‘expectations and realisations’, ‘an honour and a pleasure’ and ‘treatment needs’ encapsulate their experience.
DISCUSSION: The findings from this study recontextualise the lived experience of HCV within a new era of treatment. In doing so, they expose social and emotional spheres of illness, and a perception of illness chronicity, which remain untouched by the treatment revolution. Further, this work emphasises how treatment inequalities fundamentally underpin multiple aspects of the daily lived experience, and are integral to how those living with HCV articulate the disease. The implications of this work challenge current HCV policy and clinical practice.
Original languageEnglish
QualificationPh.D.
Awarding Institution
  • Edinburgh Napier University
Supervisors/Advisors
  • Whittaker, Anne, Supervisor
  • Elliott, Lawrence, Supervisor
  • Cunningham-Burley, Sarah, Supervisor
Publication statusPublished - 2016

Keywords

  • HCV
  • hepatitis C virus
  • lived experience
  • healthcare provision
  • chronic illness

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