Chapter Two: Literature Review

Hepatitis C was first identified as such in 1989. Prior to this it was described as non-A, non-B hepatitis. As the history of this virus is so recent, literature relating specifically to hepatitis C is confined largely within the last decade and is primarily medical in focus. Most social research has focused on prevention and transmission-related issues, aided by the longer history of research into the transmission of blood-borne viruses, for example regarding HIV/AIDS and injecting drug use. However, a growing body of psycho-social research about individuals with hepatitis C often uses a quantitatively measured quality of life construct, which is health-based in its focus. In much of the world there is a dearth of sociologically based research on people living with hepatitis C. Australia appears to be ground-breaking in this regard, with an emerging sociological focus on issues relating to discrimination, and the importance of the social and cultural context in the experiences of people living with hepatitis C.
Medical / public health literature
Medical literature can be broadly divided into two areas: that of medical science and public health. As hepatitis C is such a new disease, the interest in the area of medical science is high. Books and papers from this discipline are written using medical terminology and are not designed with the lay person in mind. Areas focused on include: the molecular characterisation of hepatitis C and liver histology (Koff and Wu 2002, Thompson and Locarnini 2001, Bowen et al 2001), clinical management, interferon and development of new treatments (Dore 2001, 2001a, Sadovsky 2002, Sievert 2001, 2002) and the aetiology and transmission of hepatitis C (Cohen 1999, Serfaty 1999, Davala and Riely 2002). Theoretically this work comes from a positivist viewpoint, with a focus on the clinical picture of acute and chronic hepatitis C. Cohen (1999), while primarily concentrating on the aetiology of the disease, points to similarities in the state of current hepatitis C research and HIV research in the 1980s. He queries why, when there are substantially more cases of hepatitis C, the scientific community is not responding as they are with HIV/AIDS. Similar concerns are raised by Crofts et al (1997) who posit that Australia’s slower reaction to the hepatitis C epidemic (than HIV/AIDS) is due to the perception that hepatitis C is largely confined within the IDU population.

Public health literature on hepatitis C is primarily focused on information and education about the virus, aimed at both the infected person and the larger community. Self-help books (Heathcote 2001, Dolan 1999) are aimed at the individual with hepatitis C and are clear, easy to understand and cover the main physical aspects of the disease. Resources such as Cope (2001) and the National Hepatitis C Resource Manual (Centre for Development and Innovation in Health 2001) aim to educate and inform sectors of the public1 as well as infected people. Heathcote, Dolan and Cope posit and answer questions about the nature and progression of hepatitis C, the symptoms that can be expected, and available treatments. Within public health literature there is a growing psycho-social focus, with emphasis on ‘Quality of Life’ (Strauss 1975): a construct generally measured by instruments such as the Short Form 36 survey (SF36) or the Sickness Impact Profile (SIP). Research into hepatitis C related ‘Quality of Life’ (QoL) has found that people living with hepatitis C have an impaired QoL compared with control groups and that health-related QoL does not appear to be associated with severity of liver disease (Miller et al 2001, Macdonald et al 2002, Dore 2002).
Treatment
Considerable literature has been written on the prioritisation and inconsistencies of conventional treatment criteria; in particular, the issue of whether current drug users should receive interferon therapy. A general finding is that patients on methadone maintenance should not be excluded from treatment as their rates of compliance and sustained virological response (SVR) do not differ from that of non-drug users (Edlin et al 2001, Davis and Rodrigue 2001, Onyike 2004, Leavit 2001, Sadovsky 2001, Sylvestre 2004, Sylvestre et al 2004, Van Thiel and Creech 2003). Poor treatment compliance is due to the side effects of interferon which have been well documented in the literature (Sylvestre et al 2004, Swan and Raymond 2004, Dolan 1999, Dore 2001a, Jenner 2003, Sievert 2001, 2002, Weilert et al 2004, Burke 2001, Loveday 2003, Onyike et al 2004). Sylvestre et al (2004) present their finding that patients who smoked marijuana during treatment actually had an improved compliance and therefore success rate, as opposed to individuals who were drug free. This is a controversial result which Sylvestre was encouraged not to make public (Sylvestre 2004). Sylvestre et al’s finding is not surprising, in that marijuana can alleviate some of interferon’s side effects, thus improving rates of compliance.

Much of the literature on interferon therapy emphasises issues of compliance (Strinko et al 2004) but rarely are the social or contextual issues addressed that would make the interferon experience more bearable for patients. Only Strinko et al (2004) address the effect that social supports may have on treatment compliance, with a focus on nursing. Valuable in this field would be research into the effectiveness in peer and social supports in improving the interferon experience and thus improving compliance rates. Another issue seldom addressed in the literature on treatment compliance (Gerber and Nehemkis 1986), is that of complementary and alternative medicine (CAM). CAM used simultaneously with interferon may improve the experience of side effects, thus improving compliance rates. CAM, and its appropriate use for hepatitis C, is reviewed thoroughly by Brown (2004), Rasmussan (1999), Flatt (1999), Dolan (1999), Arachne (2001) and Heathcote (2001), although this is primarily with a view to these treatments as alternative to conventional medicine, rather than complementary. Waller (2004) in her study of hepatitis C symptoms, reports that alternative treatment modalities are generally experienced as valuable, in that they offer validation and treatment for symptoms that were not available from conventional medical sources. This correlates with the experiences of my participants, and is addressed in greater detail in Chapter Seven.
Risk/ harm minimisation, IDU and hepatitis C
At the Fourth Australasian Conference on Hepatitis C (2004) there were a number of papers pertaining to current intravenous drug users, the contextual nature of their risk practices and the need for increased services for this population. It was proposed that in order for hepatitis C to become a priority for drug users, the primary issues caused by stigma and poverty would first need to be addressed (Madden 2004, Van Beek 2004, Henderson 2004, Nguyen 2004 also Habib 2003). A qualitative Dublin study (Smyth et al 1999) of 105 intravenous drug users attending for methadone or detoxification treatment found that over a third of the participants falsely believed that they could contract hepatitis C when injecting safely. However, participants also frequently underestimated the risk of exposure to hepatitis C, a finding said to correlate with other studies of a similar nature (Smyth et al 1999:262). To my knowledge no qualitative research has been done in this area in New Zealand; although in 1997 a survey took place among needle exchange customers asking about their risk practices in conjunction with a blood prick swab test for hepatitis C and HIV2. Of the 223 intravenous drug users successfully surveyed two (0.9%) were HIV positive while 119 (53%) had hepatitis C (Kemp and Mac Donald 1999). A similar quantitative survey is presently under construction (Paul 2004).
New Zealand hepatitis C literature
New Zealand has produced minimal literature on hepatitis C, either from a social or medical standpoint. Qualitative graduate research with small sample groups (Pooley 1996, Jenner 2003, Hanssens 1995) has formed the main source of scholarly social information. Hanssens 1995 dissertation addresses hepatitis C contracted through ‘bad blood’. His qualitative research is based on in-depth interviews with six Auckland men who have haemophilia and hepatitis C. The main rationale for this study was to:
… address a recognised imbalance in scientific literature … a lack of data from the viewpoint of those with a chronic illness and the post infection impact the disease has on their quality of life. (Hanssens 1995:15)
Hanssens has acted as a representative for litigants who contracted hepatitis C through contaminated blood product between 1990 and 1992. These dates are significant: 1990 was the year when a blood screening procedure became available in New Zealand, and 1992 is the year it was implemented. While much of the Australian social literature on hepatitis C is largely concerned with intravenous drug use as the major mode of transmission, a focus on transmission through ‘tainted blood’ has received more attention in countries such as Canada (Orsini 2002). This is likely to reflect the greater public sympathy for recipients of tainted blood, than for people with hepatitis C acquired through intravenous drug use. The distinction between ‘guilty’ and ‘innocent’ victims of hepatitis C is analysed in The Good Liver (Hepatitis C Council of Victoria 2002) and C Change (Anti-discrimination Board of New South Wales 2001:142). Coney (1993) addresses New Zealand’s bad blood scandal and this, a one page article in The Lancet, appears to be the only peer reviewed published work on the subject.

Jenner, like Hanssens, has hepatitis C and his 2003 Masters Thesis: ‘Visual and Narrative Texts of Chronic Illness’ concentrates on the treatment options utilized by his thirteen participants. Jenner provides an analysis of his participants’ visual texts of hepatitis C, in part to uncover if there is correlation between the type of visualization used (for example hepatitis C as an obtrusive invader or as at one with the body) and the treatment modalities undertaken. Jenner provides a comprehensive overview of how biomedicine (and by extension interferon) positions disease as an alien entity against which aggressive action is needed; whereas other treatment modalities, such as Chinese medicine, see disease as an imbalance corrected by the restoration of bodily harmony. While Jenner also uses a narrative analysis, his work differs from this thesis, in that drawings are the primary text analysed and treatment modalities are a central focus.

Pooley’s 1996 Masters thesis is a qualitative research project interviewing twelve individuals on the methadone maintenance program. She devotes a chapter to hepatitis C (1996:39-50), as this is a disease rife amongst those on methadone. Pooley finds that whilst heavily addicted, intravenous drug users generally ignore signs of ill health, so are less likely to realize that they have hepatitis C. Health professionals were seen as reluctant to treat those on methadone with hepatitis C; although in New Zealand there is no mandate for them not to do so. Recognition is given in this chapter of the risk of relapse that injecting interferon may bring for ex-addicts, an important issue that is predominately neglected elsewhere (apart from a brief mention in Dolan 1999, Swan and Raymond 2004).

New Zealand research is also found within conference papers given at the Australasian Conferences on Hepatitis C (Crossen et al 1999, Rasmussan 1999, Jang 1999, McLean 1999). However, these have rarely resulted in publication and the conferences have become increasingly dominated by Australian research3. Crossen et al (1999) undertook a qualitative research project interviewing eleven individuals in Christchurch about their experiences of living with hepatitis C. A key finding was that health professionals did not provide participants with enough information or support. Diagnosis was also handled in an insensitive way, with some participants informed of their status through letter or phone call. These findings are also revealed in my study which, rather than making it redundant, show that similar situations exist in New Zealand’s urban centres, and that sadly, little appears to have changed in the last five years. Participants in Crossen et al’s study report the value of the hepatitis C support group that they attended, in particular the benefit of being able to talk to others with the disease. This reaffirms my recommendation for increased peer support, as in comparison with Christchurch, Auckland presently lacks a functioning peer support group. Jang (1999) and McLean (1999) both affirm the importance of peer support groups in alleviating isolation and providing information for those with hepatitis C.

Community group literature, from agencies such as needle exchanges and The Hepatitis C Resource Centre, is a constant source of uncensored information aimed at those with, or at risk of catching, hepatitis C. Within New Zealand this is one of the most prolific sources of public information. However, as this information predominately appears via community group newsletters it is seldom accessed by the wider public, or academia. Examples of needle exchange newsletters in New Zealand are DIVO News (Dunedin Intravenous Organisation), Mainline (Roger Wright Centre, Christchurch) and Insite (Auckland Drug Information Outreach). These provide general information on hepatitis C as well as how to ‘shoot clean’ and avoid transmission. The Auckland Hepatitis C Resource Centre sends out The Chronicle to its members which reports on a range of issues from policy and treatment developments to personal reader experiences. In 2000 The NZ Hepatitis C Resource Centre produced ‘Hepatitis C - The Silent Epidemic’, a video with a public education and harm minimisation focus. Brown, manager of the Centre, in 2003 produced the results of an exploratory survey into the experiences of 134 people living with hepatitis C in the Auckland district (Brown 2003). Brown (2004) has also produced a comprehensive document on conventional and alternative therapies for people with hepatitis C. This is a valuable resource as is much of the other information coming out of Hepatitis C Resource Centres.

New Zealand is considerably behind Australia regarding a sociological focus on people living with hepatitis C. The Ministry of Health (2002) Action on Hepatitis C Prevention: A discussion document points to a growing awareness of the problem in New Zealand, but its priority is one of harm minimisation and preventative action. The document’s aim is to:
… open discussion on how to prevent the future spread of hepatitis C, based on a analysis of international and domestic evidence. (Ministry of Health 2002a).
Within the media release attending this document is a general description of hepatitis C. This includes the progression to chronic infection in 75% of those infected, the major routes of transmission, and the poor efficacy of current treatments (MoH media release 2002:2). About these factors there is major agreement in the literature, with much correlation of figures regarding different routes of transmission. The consensus regarding New Zealand is that prior to the1992 implementation of blood screening, 80% of infection results from intravenous drug use (Mussen 2000, MoH 2002). The social repercussions of this are worthy of study, but within New Zealand interest is still low. Policy documents on hepatitis C in New Zealand have begun to emerge in the past two years (MoH 2002, Easton 2002). These primarily have an economic, epidemiological and infection prevention focus. Scant reference is made to individuals living with the virus, apart from how much they will potentially cost the health care system each year (MoH 2002, Easton 2002). Any media coverage has primarily an economic (Mussen 2000), or legal (Hill 1997) focus.
Australian hepatitis C literature
Australia appears to be foremost in the world on the quality and quantity of research undertaken on the subject of hepatitis C (Wooldridge in Crofts et al 2001). From my literature searches the majority of social research on people living with hepatitis C has been Australian in origin. This is in part due to the Australian Government’s support and recognition of the disease as an under-researched problem. Incorporation of hepatitis C into the National HIV/AIDS strategy as a related disease increased the prominence of hepatitis C, although tensions arose regarding funding (Crooks 2002)4. In 2000 a National Hepatitis C strategy was formulated which recognised the social impact of the virus and provided a framework for national action (Wooldridge in Crofts et al 2001). In 1998 the Australian Strategic Research Development Committee (SRDC) made one million Australian dollars available to focus on hepatitis C social and behavioural research (Main 2002:6). One of these twelve funded studies was Sandy Gifford’s study on the social and health concerns of women with hepatitis C (2003). Her objective was to research the situation of women living with the virus and collect baseline data on their specific social and health concerns. This allocation of funds by the SRDC was groundbreaking in that it was the first time that the psycho-social aspects of living with hepatitis C had been targeted as a research priority.

Also a landmark was the Anti-Discrimination Board of New South Wales, C Change: Report of the enquiry into hepatitis C related discrimination (2001). This influenced the focus of many later Australian studies on hepatitis C as well as prompting Australian Hepatitis C Community groups to run articles about discrimination in their newsletters. Australia has several Hepatitis Councils each publishing their own newsletters, and those such as ACT Hep C News (ACT Hepatitis C Council 2002) and The Good Liver (Hepatitis C Council of Victoria 2002) both cite the Anti-Discrimination Board’s findings. These Hepatitis Councils also make policy submissions, such as ‘National Strategy’ (Hepatitis C Council of South Australia 1999) and oversee the development of resource literature (Cope 2001). Also stemming from the C Change report was the focus on discrimination at the Third Australasian Conference on Hepatitis C, held in Melbourne, March 2002. Many papers addressed the prevalence of discrimination within the health care setting (Treloar et al 2002), which has been well documented within Australian social research on hepatitis C (Gifford 2003, Hopwood and Treloar 2003, Day et al 2003, Day et al 2004, Loveday 2003, Puplick 2001, Ward et al 2000, ADB of NSW 2001, Cope 2001, Crofts et al 1997). Of interest would be the outcomes of a similar research focus in New Zealand.

Krug and Hepworth (1999a) present a challenge to the heath care sector to develop a holistic approach to hepatitis C management. They call for an awareness of the everyday effects that the virus has on individuals and criticize the medical literature’s focus on the physical aspects of hepatitis C (as opposed to the social and psychological). This is a small study, based on thematic analysis of qualitative data from six individuals with hepatitis C. Also addressed are issues of identity change following a positive hepatitis C diagnosis. This study mirrors (while not referring to) themes prominent within the literature on chronic illness such as biographical disruption (Bury 1982) and the medical system’s inadequacy to address the patient as an experiential individual (Lupton 2003, Crossley 2003, Carson 2002, Lorber 2000, Little et al 1998, Charmaz 1997, Wendell 1996, Frank 1995, Leder 1990, Hunter 1991, Kleinman 1988, 1995, Illich 1976). Krug and Hepworth (1999) also state that there is a lack of and need for genuine dialogue between community groups and the medical system. They report the difficulties that hepatitis C community groups have in being heard at medically orientated conferences, in which they are often positioned as lower class troublemakers. Southgate et al (2002) similarly provides a strong recommendation for the development of mechanisms to facilitate on-going dialogue between community, researchers and government, so that the research agenda is responsive to conditions ‘on the ground’. This monograph analyses the social research needs pertinent to hepatitis C in Australia. The Australian Intravenous League (AIVL) and the Australian Hepatitis Council (AHC) were consulted on this issue with both nominating discrimination and stigma as top research priorities (Southgate et al. 2002:1).

The National Centre for HIV Social Research (NCHSR) based at the University of New South Wales is funded by the Australian Commonwealth Government and has produced a body of social research on hepatitis C (Van de Ven et al 2001, Southgate et al 2002, Treloar et al 2003, Hopwood and Southgate 2003, Hopwood and Treloar 2003, Treloar and Hopwood 2004, Fraser et al 2004, Fraser 2004, Waldby et al 2004). Hopwood and Southgate’s 2003 ‘Living with hepatitis C: a sociological review’ highlights the lack of a systematic exploration of issues to do with the socio-cultural dimensions of living with hepatitis C. Recommendations are made for: an increase of information about hepatitis C to be available to the general public, individuals with hepatitis C to be consulted in policy decisions, and research to be conducted on the experiences of individuals living with the virus using a narrative analysis. Hopwood and Treloar’s (2003) 3D project (designed by Southgate) focuses on issues of diagnosis, disclosure, discrimination and living with the virus. This study employs both quantitative and qualitative methodology in surveying individuals living in NSW with hepatitis C. Conclusions include: that individuals with hepatitis C rarely receive sufficient information about their condition or referral to appropriate services following diagnosis, that there is a need for a broad based dissemination of information on a range of issues among people with hepatitis C, and that individuals with hepatitis C experience a range of negative reactions and outcomes due to disclosure of their health status.
Other hepatitis C literature
From my library and database searches for hepatitis C related social literature, material from Australia was dominant, and therefore the larger section has been devoted to reviewing this literature. Australia’s social research on the subject is also especially pertinent for New Zealand as the countries have a similar proportion and demographic of infected individuals. I found a scant amount of USA based social literature on hepatitis C. However, Swan and Raymond (2004) have produced a recent and very comprehensive study on hepatitis C, its treatment modalities and HIV/HCV co-infection. In the USA the dominant construction of hepatitis C is that of a disease of blood transfusion and sexual transmission. This means that what resources are put into hepatitis C prevention or control often go in the wrong directions, for example to STD clinics, instead of harm reduction programmes among intravenous drug users (Crofts et al 2001:xvii).

Discrimination is seldom a focus in North American literature, although two exceptions to this are Stephenson (2001) and Zickmund et al (2003). Stephenson addresses the restriction of access to hepatitis C treatment for individuals on the methadone maintenance program. He presents a ‘real life story’ highlighting the discrepancy of care when an individual is expected to stop one form of treatment (methadone), and risk relapse in order to receive another one (interferon). This article reflects American policy, as in New Zealand individuals may receive interferon treatment while on the methadone but not while injecting illicit drugs. Zickmund et al uses the Quality of Life construct in exploring stigma experienced by individuals with hepatitis C , and concludes that incidences of stigmatisation are high, more likely to be experienced by women, and in health care or relationship contexts. A qualitative Irish study (Glaken et al 2001) of nine individuals with hepatitis C, primarily concentrates on the transitional nature of diagnosis. Iterated by the authors is the importance of the participants being given a voice within the research, also a central aim of this thesis.
Chronic illness, narrative and neo-liberalism.
Hepatitis C is a chronic illness and as such I shifted my reading focus: from material primarily to do with hepatitis C, to that of chronic illness in general. I was inspired by the work of: Broyard 1992, Brody 2003, Kleinman 1988, Charmaz 1995, 1997, 2001, Register 1987, Frank 1991, 1995, 2004, Bury 1981, 2001, and Williams 1997, 2000 in the construction of this thesis. Brody’s work (2003), philosophical in nature, draws on depictions of illness in literature to explore the dimensions of what illness means to the afflicted and those around them. When this book was first published in 1987 (second edition significantly expanded) it helped to inaugurate a renewed interest in the importance of narrative studies in health care. Brody stresses the importance of understanding stories of sickness for a philosophical understanding of what it means to be sick, for ethical guidance and for improving the quality of health care and the education of professionals. In this sense Brody’s work is similar to that Frank (1991, 1998, 2002, 2004) Kleinman (1988) and Broyard (1992) who focus on narrative, the lived experience of illness and the paucity of the typical doctor-patient interaction. Broyard and Frank however, also employ their own narrative of illness; they describe a personal experience of cancer, an illness from which Broyard did not return (Frank 1991, Broyard 1992). For Frank this experience, and the book which came from it (1991), was a formative influence on his later, more theoretical, work (1994, 1995, 1996, 1998, 2002, 2004). Frank’s The Wounded Storyteller (1995) outlines a theory of three narrative types5, which have been utilised throughout this thesis. His narrative theory is influential, and is also used by Thomas-McLean (2004) in her analysis of breast cancer narratives.

Narrative has acquired a key place in scholarly literature on chronic illness. Narratives are seen as enhancing the process of meaning-making in the illness experience both for the ill person and the outsider (Kleinman 1988, Little et al 1998, Williams 2000). Frank’s is just one of many formulations of illness narrative. Bury’s narrative types are those of contingent, moral and core narratives (2001) although he is probably better known for his biographical disruption theory (1982). Bury posits that the diagnosis and symptoms of chronic illness create a major biographical disruption in the life of the ill person6. This concept is evident in many personal illness narratives (Frank 1991, Broyard 1992, Toombs 1995) and theoretical writing on chronic illness (Bury 1982, Kleinman 1988, Garro 1992, Charmaz 1995, 1997, 2001, Frank 1995, Williams 1996, Hyden 1997). However, it is important to recognise that this concept is contextual, in that, for some, illness may be just another event in an already difficult existence. This factor has begun to be recognised by chronic illness theorists (Williams 2000, Wilkerson 2003, Faircloth et al 2004) with Faircloth et al (2004) coining the term ‘biographical flow’ as an antithesis to that of biographical disruption.

Wilkerson (2003) in bringing together the narratives of “the sick and the queer” as “kindred stories in challenging oppressive notions of normality” (2003:117) argues for the role that oppositional personal narratives can have in aiding more inclusive social relations. She speaks of how Frank (and Parson’s) sick role requires a ‘narrative surrender’ to the medical system and how through the use of personal narrative this surrender may be forgone. The personal illness narratives of Lorde (1980), Toombs (1995), Broyard (1992) and Frank (1991) are definitely no ‘narrative surrender’. They are powerful and potentially confrontational in their articulation of the pain and difficulty of being a world which disregards sickness and is geared towards the ‘normal’ healthy individual. The structure of society is important in narrative analysis, for as Kleinman says culture “infolds into the body and reciprocally bodily processes outfold into social space”. Social and cultural practices inscribe the body with meanings and the body, through narrative, projects its realities onto social space (Kleinman 1994 in Frank 1996:737). To provide a contextual element to these illness narratives I draw upon the theories of Porter and Craig (2004), Tickell and Peck (2003), Peck (2004) and Rose (1999) to explicate the impact that our current neo-liberal society has on the way people experience chronic illness7. As Agich (1995) writes, the liberal model of autonomy is geared towards acute illness and provides little social resources or recognition for the chronically ill.

There is a great deal of literature on how, due to its reductionist tendency, conventional medical understanding typically fails to capture the embodied experience of illness (Lupton 2003, Crossley 2003, Carson 2002, Lorber 2000, Little et al 1998, Charmaz 1997, Childress 2002, Wendell 1996, Frank 1995, Leder 1991, Hunter 1991, Kleinman 1988, 1995, Illich 1976, Katz 1984)8. Charmaz (1997) like Kleinman explores the creation of meaning in illness. While Kleinman (1988) writes of the doctor-patient relationship Charmaz (1997) focuses on the daily experiences of her participants; in particular how their self concept and relationship with time can change due to chronic illness. While Frank, Kleinman, Broyard and Hunter call for a narrative reciprocity between doctor and patient, Charmaz looks outside of this relationship to the chronically ill’s need for wider social services:
Many solutions to patients’ problems lie beyond the medical care system … what chronically ill people need is a health care system based on services – diverse services. (Charmaz 1997:263)
Register (1987), like Charmaz, interviewed a wide range of people with various chronic illnesses and published a book drawing upon their experiences. Register’s book has a personal impetus. She has Caroli’s disease (a congenital defect of the liver) and in receiving minimal peer support felt “isolated from normal human experience” (1987:xiii). The book is less academic in nature than others in this review. It is written with the ill person and their families in mind, so that they are better able to understand and respond to the illness experience.
Stigma and HIV/AIDS
Hepatitis C is a stigmatised disease. This is primarily due to its conflation with intravenous drug use and its infectious nature. The word stigma originates from the Greek practice of branding slaves who were caught trying to escape. The brand was F for fugitive, the word for such a mark was stigma. From this practice the meaning of stigma was extended to embrace any mark or sign for perceived or inferred conditions of deviation from a norm (Wiener 1995:53-4). Theoretical literature on stigma generally refers back to Goffman (1963), whose work has been highly influential in the field. Goffman posits stigma as an “attribute that is deeply discrediting” (1963:13). This involves a discrepancy between a virtual ‘normative’ and an actual social identity. The stigmatized person goes through phases of a ‘moral career’, which involves changes in conception of self, within which s/he learns and incorporates the stand point of the ‘normal’ and the consequences of possessing a discredited attribute. Goffman’s work on stigma is a theoretical influence present in Southgate et al. (2002), Krug and Hepworth (1999a) and the Anti Discrimination Board of New South Wales (2001) and also of Miller and Kaiser (2001), and Osyerman and Swim (2001). These two latter papers are cross-disciplinary, occurring within a psychological framework, while also drawing on sociological theory. While nether of these articles refer to hepatitis C, their theoretical value is noted by Southgate et al. in Social Research Needs Analysis (2002).

Ainlay et al (1986) present a multi-disciplinary view of stigma, with focus on how stigmas develop and what sustains or diminishes their power. Stigma is posited as a historically and culturally contingent construct, with the changing view of alcoholism (from morally reprehensible to a disease) given as an example. Scrambler (1998) similarly writes about the changing paradigms of stigma and disease. Stigma is enhanced in diseases for which people considered are culpable, for example AIDS and in relation, hepatitis C. Wiener (1995) writes that:
It was found [from experiments with participants rating illnesses] that an illness would lead to the most rejection if it was severe, contagious, avoidable, caused by behaviour, and sexually transmitted … The classification of illness according to the degree of personal responsibility influences not only the reactions of laypeople but also the care that practitioners may give to their patients.... In sum the quality of care may in part depend on the moral evaluation of the patient. (Wiener 1995: 60-61)
This links back to the Australian social research on hepatitis C which found a high prevalence of discrimination in the health care sector. As Ainlay 1986, Wiener 1995, Sontag 1978 and Gilmann 1988 write, each society creates hierarchies of desirable and undesirable characteristics, and for contemporary Western society at least, intravenous drug use is one of the most reviled. While historically disease has been regarded as a form of punishment for wrongdoing (Ainlay 1986, Wiener 1995, Sontag 1989, Gilmann 1988, Gilmore and Somerville 1994, Zickmund 2003), documented reactions of moral outrage towards people with AIDS9 and hepatitis C show that this viewpoint is still in circulation.

HIV/AIDS shares many characteristics with hepatitis C. They are both stigmatized diseases, viewed as serious, contagious and resulting from (as some would see it) morally reprehensible behaviour. Some of the material which informed this thesis is specifically related to HIV/AIDS. This is a large field of literature which my research has only touched upon. Feldman and Bayer (1999) address the politics surrounding bad blood contagion that occurred around the world from the 1970s (and up to 1992 in New Zealand). This focuses on the transmission of HIV/AIDS but is pertinent to the experiences of haemophiliacs and others who contracted hepatitis C in New Zealand before 1992. Rosengarten et al. (2004) address the use of HIV medical technologies from the perspective of their prescribers and Visser and Grierson (2002) the use of alternative therapies by people living with HIV/AIDS in Australia. They find that most people living with HIV/AIDS use CAM to complement Anti-Retroviral drugs, not as an alternative. Poverty is not seen to be a significant correlate of CAM use as many utilizing these therapies live below the poverty line. These findings correlate with the experiences of my participants. Other sources that address the use of CAM therapies, although not specifically to do with AIDS, are Jenner (2004), Rausmussan (1999), Manheimer et al 2003, Arachne (2001), Sharma (2001), Scott (2003), Foote-Ardah (2003), Brown (2004), Waller (2004) and Dolan (1999).

McNab and Worth (1999) conducted a New Zealand qualitative research project which consisted of interviewing 31 men with HIV/AIDS. They focused on the lived experience of participants and the circumstances surrounding their positive diagnosis. A similar study based in the UK, is that of Holt et al (1998). This is a qualitative research project involving 40 gay or bisexual men, focusing on the role disclosure had to play in coping with HIV infection. Conclusions were that while disclosure was a potent and recurring stressor it also formed a mechanism for individuals to gain control and/or cope with their infection. Holt et al point out that much of the literature on disclosure is primarily quantitative and gives scant consideration to underlying rationales. Harrington (1997) analyses the discourse of guilt and blame prevalent in the USA towards people living with AIDS. By addressing the widespread US media coverage given to Kimberly Beralis, who contracted AIDS from a dentist visit, Harrington analyses how the disease has been constructed in terms of its ‘guilty’ and ‘innocent’ victims. This is pertinent to hepatitis C, as people receiving the disease from medical procedures are often constructed as ‘innocent’ as opposed to ‘guilty’ drug users. AIDS has been viewed as a metaphor for social disorder; an invader from outside that makes the body physically and socially unclean, contagious, and set apart (Herek 1999, Lorber 2000, Sontag 1989, Gilmann 1988, Nelkin 1999).
Conclusion
In summary, a focus on the social and lived experience of individuals with hepatitis C is a relatively new and under-developed field. The majority of literature and research on hepatitis C has been within the discipline of medical science, with a focus on the clinical picture of the virus and development of drug treatment regimes. Australia is a world leader in the development of social research on hepatitis C, propelled by the SRDC’s 1998 decision to allocate a million dollars to hepatitis C as a social research priority. New Zealand is in a similar situation to Australia regarding the spread of hepatitis C, with approximately 1% of both populations being infected, and recognition that the majority of transmission stems from intravenous drug use. The social research implications of a virus largely contained within the intravenous drug using community is only now being explored in Australia. New Zealand’s present focus on prevention is necessary, but overlooks the considerable social barriers faced by people with hepatitis C. There is a need for qualitative social research in this area to give a voice to the lived experience of people with hepatitis C. This is important as individuals living with the virus, often stigmatised and socially marginalised, are heard rarely within academic or policy research. Drawing on the sociology of chronic illness I have chosen to employ narrative theory: to convey the experiences of my participants and help effect a move away from the hepatitis C epidemic as one of ‘silence’ in New Zealand.