Chronic Illness Experiences, Clinical Markers and Living with Hepatitis C

Abstract

This study explores the experiences of people with hepatitis C within two models of chronic illness--illness trajectory and shifting perspectives--and examines the effects of clinical markers of disease in relation to perceived health. The findings show some support for both models and suggest how they can be seen as complementary and inter-related. The social consequences of living with hepatitis C, such as potential social limitations and isolation, were more significant and had greater impact than clinical markers of disease progress and should be emphasized in understandings of transformation experiences in chronic illness.

Views and experiences of hepatitis C testing and diagnosis among people who inject drugs: Systematic review of qualitative research

“…PWID perceived themselves as never being completely safe from, or in control of HCV transmission despite their intentions and actions to reduce risk (Carrier et al, 2005;Davis, Rhodes, & Martin, 2004;Harris, 2009b;Rhodes, Davis, & Judd, 2004;Roy, Nonn, Haley, & Cox, 2007;Sutton & Treloar, 2007;Swan et al, 2010;Wozniak, Prakash, Taylor, & Wild, 2007). However, there were exceptions, with studies noting that the extent to which PWID participated in the 'normalised discourse' was influenced by their situation, social context and personal relationships (Wozniak et al, 2007;Roy et al, 2007;Harris, 2009b).…”

“…For those with concerns about a positive diagnosis, anxiety over the impact of HCV on the chances of finding a long term partner, sexual relations, starting a family and the possibility of transmission predominated (Carrier et al, 2005;Harris, 2009b;Temple-Smith et al, 2004;Tompkins et al, 2005;. A positive diagnosis led some 10 PWID to re-evaluate their lives and make the first steps towards a life away from their drug use (Roy et al, 2007;Sutton & Treloar, 2007;Swan et al, 2010) or towards adopting a healthier lifestyle, such as eating more healthily and reducing alcohol and drug use (Cullen et al, 2005;Faye & Irurita, 2003;Khaw et al, 2007;Roy et al, 2007;Sutton & Treloar, 2007;Wozniak et al, 2007;Wright et al, 2005).…”

“…) Experiences of being informed on the outcome of testing were generally poor. Many PWID remained unclear about the meaning of a diagnosis and experienced limited and inadequate information provision by health professionals, leading to substantial gaps in knowledge (Copeland, 2004;Cullen, Kelly, Stanley, Langton, & Bury, 2005;Faye & Irurita, 2003;Khaw et al, 2007;Lally et al, 2008;Rhodes et al, 2004;Southgate et al, 2005;Strauss et al, 2008;Sutton & Treloar, 2007;Swan et al, 2010;Temple-Smith, Gifford, & Stoové, 2004;Tompkins et al, 2005). A policy of not informing 8 PWID of the outcomes of testing ("a no news is good news approach"), as described in two drugs services , also produced anxiety.…”

Drug treatment clients' readiness for hepatitis C treatment: implications for expanding treatment services in drug and alcohol settings

“…Some people experience significant impairments they attribute to hepatitis C infection, referring to "hep C attacks" 17 or episodic experiences of ill health. 18 However, these studies also suggest many people do not experience clear symptoms they can attribute to hepatitis C infection. For those who have their liver function monitored regularly, the impact of clinical markers such as alanine aminotransferase (ALT) test results are often ambiguous and cannot be relied upon to drive individual interest in hepatitis C treatment.…”

“Don’t think I’m going to leave you over it”: Accounts of changing hepatitis C status among couples who inject drugs

“…Participant accounts of status confusion and contradiction, of doctor's mistakes and lay (mis)understandings, need to be balanced against the limitations of conventional biomedical approaches to HCV education and care. Social researchers have consistently described the disconnection reported between people's lived experience of HCV and biomedical concerns focussed solely on the physical body (Harris, 2005;Krug, 1995;Sutton and Treloar, 2007). As Rhodes and Treloar (2008) argue, biomedical responses can be "at extreme odds with the situated and competing priorities of people who inject drugs" (p. 1330).…”