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

Citation

Whiteley D, Whittaker A, Elliott L & Cunningham-Burley S (2018) Hepatitis C in a new therapeutic era: Recontextualising the lived experience. Journal of Clinical Nursing, 27 (13-14), pp. 2729-2739. https://doi.org/10.1111/jocn.14083

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.

Keywords
direct‐acting antivirals; hepatitis C; interferon‐free treatment; lived experience; social phenomenology; thematic analysis; treatment rationing

Journal
Journal of Clinical Nursing: Volume 27, Issue 13-14