David Whiteley1, Anne Whittaker2, Lawrie Elliott3, Sarah Cunningham-Burley4. 1. Regional Infectious Diseases Unit, Western General Hospital, Crewe Road South, Edinburgh EH4 2XU, United Kingdom; School of Health and Social Care, Edinburgh Napier University, Sighthill Campus, Sighthill Court, Edinburgh EH11 4BN, United Kingdom; Substance Misuse Directorate, NHS Lothian, Woodlands House, Astley Ainslie Hospital, 133 Grange Load, Edinburgh EH9 2HL, United Kingdom. Electronic address: dwhiteley@nhs.net. 2. School of Health and Social Care, Edinburgh Napier University, Sighthill Campus, Sighthill Court, Edinburgh EH11 4BN, United Kingdom; Substance Misuse Directorate, NHS Lothian, Woodlands House, Astley Ainslie Hospital, 133 Grange Load, Edinburgh EH9 2HL, United Kingdom. 3. Department of Nursing and Community Health, School of Health and Life Sciences, Glasgow Caledonian University, Cowcaddens Road, Glasgow G4 0BA, United Kingdom. 4. School of Molecular, Genetic and Population Health Sciences, University of Edinburgh, Teviot Place, Edinburgh EH8 9AG, United Kingdom.
Abstract
BACKGROUND: International discourse concerning the evolution in hepatitis C virus (HCV) therapy has tended to focus on improving outcomes, shortened treatment length and reduced side-effects of interferon-free regimens. How these treatments are being understood and experienced by the people receiving them has so far been overlooked. This study therefore aimed to explore the lived experience of individuals taking interferon-free HCV therapies. METHODS: Data were generated through 16 semi-structured interviews with a purposive sample of eight participants, recruited from a university hospital in Scotland. The interviews took place between June 2015 and March 2016, before and after a period of interferon-free HCV treatment. The data were interrogated using a thematic analysis, underpinned by social phenomenological theory. RESULTS: Three overriding themes were identified. 'Expectations and realisations' characterised the influence that interferon continued to cast over interferon-free treatment, contrasting the practicalities of taking interferon-free therapy with preconceived notions. 'An honour and a pleasure' portrayed a positive experience of an undemanding therapy, yet among those with a history of drug use, was also positioned as a privilege, associated with feelings of luck and guilt. 'Treatment needs' illustrated the strategies participants used to search for treatment efficacy, and the value those with a significant history of drug use placed on support. One nonconforming case is then discussed to enhance rigour and trustworthiness. CONCLUSION: This is the first qualitative exploration of the experience of interferon-free HCV treatment reported globally. The results from this study suggest a cultural lag exists between the pharmacological developments which have been witnessed, and societal understandings of them. This has implications for the way services meet the needs of, and offer therapy to, HCV positive individuals.
BACKGROUND: International discourse concerning the evolution in hepatitis C virus (HCV) therapy has tended to focus on improving outcomes, shortened treatment length and reduced side-effects of interferon-free regimens. How these treatments are being understood and experienced by the people receiving them has so far been overlooked. This study therefore aimed to explore the lived experience of individuals taking interferon-free HCV therapies. METHODS: Data were generated through 16 semi-structured interviews with a purposive sample of eight participants, recruited from a university hospital in Scotland. The interviews took place between June 2015 and March 2016, before and after a period of interferon-free HCV treatment. The data were interrogated using a thematic analysis, underpinned by social phenomenological theory. RESULTS: Three overriding themes were identified. 'Expectations and realisations' characterised the influence that interferon continued to cast over interferon-free treatment, contrasting the practicalities of taking interferon-free therapy with preconceived notions. 'An honour and a pleasure' portrayed a positive experience of an undemanding therapy, yet among those with a history of drug use, was also positioned as a privilege, associated with feelings of luck and guilt. 'Treatment needs' illustrated the strategies participants used to search for treatment efficacy, and the value those with a significant history of drug use placed on support. One nonconforming case is then discussed to enhance rigour and trustworthiness. CONCLUSION: This is the first qualitative exploration of the experience of interferon-free HCV treatment reported globally. The results from this study suggest a cultural lag exists between the pharmacological developments which have been witnessed, and societal understandings of them. This has implications for the way services meet the needs of, and offer therapy to, HCV positive individuals.
Authors: Yone de Almeida Nascimento; Luciana Diniz Silva; Djenane Ramalho de Oliveira Journal: Int J Environ Res Public Health Date: 2022-10-01 Impact factor: 4.614
Authors: Jacqueline A Richmond; Jeanne Ellard; Jack Wallace; Rachel Thorpe; Peter Higgs; Margaret Hellard; Alexander Thompson Journal: Hepatol Med Policy Date: 2018-08-04