Venous access and care: Harnessing pragmatics in harm reduction for people who inject drugs more

This paper has been accepted for publication in Addiction and is currently being edited and typeset. Readers should note that this paper has been fully refereed, but has not been through the copyediting and proof correction process. Wiley-Blackwell and the Society for the Study of Addiction cannot be held responsible for errors or consequences arising from the use of information contained in this paper; nor do the views and opinions expressed necessarily reflect those of Wiley-Blackwell or the Society for the Study of Addiction. The article has been allocated a unique Digital Optical Identifier (DOI), which will remain unchanged throughout publication. Please cite this article as a "Postprint"; doi: 10.1111/j.13600443.2011.03749.x Title: Venous access and care: Harnessing pragmatics in harm reduction for people who inject drugs. First author (for correspondence): Magdalena Harris Research Fellow Centre for Research on Drugs and Health Behaviour London School of Hygiene and Tropical Medicine 15-17 Tavistock Place London, WC1H 9SH magdalena.harris@lshtm.ac.uk Second author: Tim Rhodes Professor of Public Health Sociology Centre for Research on Drugs and Health Behaviour London School of Hygiene and Tropical Medicine 15-17 Tavistock Place London, WC1H 9SH tim.rhodes@lshtm.ac.uk 1 Running head: Vein care pragmatics and harm reduction Word count: 3884 Conflict of interest declaration: None 1 Abstract Aim: To explore the facilitators of long-term hepatitis C avoidance among people who inject drugs. Design: We employed a qualitative life history design. Two interviews were conducted with each participant, with the second interview incorporating reference to a computer constructed life history time line. Interview accounts were audio-recorded, transcribed verbatim and analysed thematically. Setting: Recruitment took place through low threshold drug services and drug user networks in South East and North London. Participants were interviewed at the recruitment services or in their homes. Participants: The sample comprised 35 people who inject drugs, 20 of whom were hepatitis C antibody negative. Participants’ average injecting trajectory was 19 years (6 – 33), with 66% primarily injecting heroin, and 34% a crack and heroin mix. Nine (26%) of the sample were female and the average age was 39 years (23 – 53). Findings: Hepatitis C risk awareness was recent and de-prioritised by the majority of participants. The facilitation of venous access and care was an initial and enduring rationale for safe injecting practices. Difficult venous access resulted in increased contamination of injecting environments and transitions to femoral injecting. Participants expressed an unmet desire for non-judgemental venous access information and advice. Conclusions: Harm reduction interventions which attend to the immediate priorities of people who inject drugs, such as venous access and care, have the potential to re-engage individuals who are jaded or confused by hepatitis C prevention messages. 1 Introduction Hepatitis C virus (HCV) infection is a leading cause of mortality and morbidity related to illicit drug injecting practices. The burden of disease is concentrated among people who inject drugs (PWID) with over 90% of new HCV diagnoses in developed countries attributed to illicit drug injecting practices [1-3]. In the UK, up to 500,000 people are estimated to be infected. Over 40% of PWID in the UK, and over 60% in London, are HCV antibody positive [2]. The efficiency of transmission via injecting, and transmission potential via contaminated injecting paraphernalia (such as filters and spoons) as well as the sharing of drug mix and rising/mixing water in addition to needles and syringes, contributes to high HCV incidence and prevalence [4]. Harm reduction interventions have had limited success in reducing HCV incidence and prevalence among PWID [1]. This is in contrast to HIV incidence among PWID which can reduce following a combination of harm reduction interventions, including needle and syringe and opiate substitution therapy (OST) [1, 5]. In countries such as Australia and England, where these harm reduction measures were implemented early and are widespread, HCV prevalence and incidence remain high [6, 7]. Behavioral educational interventions, including safer sharing and blood awareness campaigns [8], as well as peer-led interventions [9], have also failed to impact on continuing high rates of incident HCV infections among PWID. Evidence reviews confirm that HCV or HIV risk awareness alone is insufficient to effect a change in injecting risk behaviour [10], a finding supported by qualitative evidence which emphasises HCV as a relative concern with risk reduction capacity shaped by environment [11]. 1 Qualitative methods are uniquely placed to capture the social relations of HCV risk and viral avoidance, especially from participant perspectives [12]. In a variety of settings, qualitative research has contextualised HCV infection as ‘ubiquitous’, ‘normalised’ and ‘accommodated’, depicted as an ‘occupational hazard’ and even inevitable consequence of injecting [11, 13-15]. Short term adverse health outcomes of the illness may be perceived as negligible, bolstered by a medical focus on the long term impact of the illness and contact with HCV positive peers who appear unaffected [14]. Moreover, HCV is often viewed by PWID in relation to HIV and as of lesser consequence [11, 13, 14, 16]. For many PWID short term concerns such as maintaining drug and money supply, avoiding overdose, drug withdrawals, homelessness and incarceration take precedence over longer term, less tangible, health concerns [13, 16]. Given HCV is contextualised as a relative concern, there is the additional possibility of HCV ‘prevention fatigue’ among PWID, akin to the ‘prevention fatigue’ documented among PWID and men who have sex with men (MSM) in relation to HIV risk awareness interventions [17]. Most HCV prevention research has to date concentrated its gaze narrowly upon the risks of viral acquisition. This is especially the case in epidemiological risk factor studies informing HCV health promotion. The focus of interest here is the proximal, encompassing recent or current transmission risk incidents and unsafe injecting practices. A historical or longitudinal perspective, necessary to capture situated risk factors linked to transmission, is generally absent from HCV epidemiological studies, with protective factors and long-term viral avoidance also unaccounted for [18]. HCV research that narrowly focuses on transmission risk practices, while valuable, has been critiqued for emphasising deficits in risk knowledge and avoidance among PWID networks which can reproduce popular perceptions of PWID as irresponsible and lacking in self-care [19]. HCV educational risk-focused interventions have 1 similarly been critiqued for positioning PWID as a homogenous group and for failing to account for the situational and relational contexts of drug use and risk reduction [20]. Transmission risk and ‘fear-based’ campaigns have the potential to further alienate and stigmatise PWID [21] and may inadvertently reinforce negative attitudes and beliefs [10]. These insights evidence a need for a new direction in harm reduction research and interventions, potentially comprising a move from a current focus on risk and deficit to one that attends to the protective practices and pragmatic short term concerns of PWID. Methods Drawing on the design of a previous study [24, 25], we undertook life history interviews to explore the social relations of long term HCV avoidance among PWID. Sampling and recruitment The study sample comprised 35 HCV antibody negative (n=20) and positive (n=15) PWID. Participants were required to be over 18 years of age, proficient in English, currently injecting (defined as injecting in the past 30 days) and having injected illicit drugs for at least six years. HCV antibody negative and female participants were purposively sampled for. Recruitment took place via a combination of community-based low threshold opioid substitution treatment (OST) prescribing services, drug user networks and snowballing. Recruitment services were based in South East and North London and were accessed by predominantly low socio-economic and homeless drug and alcohol users. Hepatitis C testing Participants who had not had their HCV antibody status confirmed by the participating drug and alcohol service in the past three months consented to undertake a HCV antibody test in between the first and second interview. This was conducted by a registered nurse at the participating service, with counselling provided as appropriate. 1 Data collection Data collection comprised two in-depth qualitative interviews with all but one of the participants (lost to follow-up), resulting in 69 interviews. The second interview was conducted one to three months after the first. Interviews were audio recorded and conducted in private rooms at the participating services or at participants’ homes. At the first interview an in-depth life history was taken. This was loosely structured with a focus on accounts of upbringing, education, work, accommodation, treatment and drug use history as well as changes in identity and social relationships over time. Interview data were entered into Timeline Maker software to produce a detailed timeline of the participant’s life history. This timeline was taken to the second interview to aid memory recall and to explore the connections between significant events in the participant’s life, social conditions and networks, and strategies employed to reduce risk of HCV transmission. The interview and timeline construction process are described in greater detail elsewhere [25]. Analysis Participant interviews were transcribed verbatim and entered into Nivo8 qualitative software. Data were coded as collected in order to inform the direction of subsequent interviews, coding and case selection. Patterns in and across the interviews were coded thematically while individual interviews and timelines were studied with attention to the interrelationships between viral avoidance, life trajectory, drug use patterns, network dynamics and risk context. In line with grounded theory analytic techniques [26], initial inductive or in vivo codes were broken down into smaller, more concept-driven categories, and used to inform emerging hypotheses. A central finding to arise from the data was that many of the protective practices employed by the HCV negative participants were motivated by short term and pragmatic concerns rather than HCV avoidance or harm reduction messages. Venous access 1 and care emerged as central pragmatic concerns in participants’ narratives, and it is these themes that form the key foci of the analyses presented here. Ethics and confidentiality Approval for the research was obtained from the Camden and Islington Community Research Ethics Committee (ref 10/H0722/20). Participants provided written informed consent, were assured of confidentiality, and have been provided with pseudonyms for the purpose of this and other publications. Sample characteristics The sample (n=35) included 9 women (26%). Participants ranged in age from 23 to 53 with an average age of 39 years. The number of years since participants first injected ranged from six to 33 years with an average of 19 years injecting. Thirty three participants had injected drugs in the past month. For 23 (66%), their current primary drug was heroin and for 12 (34%) a crack and heroin mix or ‘snowball’ (variously termed ‘speedball’ [35]). The majority of participants (85%) were white with 15% identifying as black, Latin American, Polish, Portuguese or Armenian. Thirty three (94%) participants were on an OST program, 24 (69%) had previously been incarcerated and 17 (49%) identified groin injecting. All of the participants were unemployed at the time of the interview and the majority resided in council flats (68%) with seven living in hostels (20%), two living with their mother (6%) and two street homeless (6%). Results Conceptualisations of HCV In line with other qualitative research findings (11, 13-15) participants conceptualised HCV as of limited concern. Risk awareness was recent: the majority of participants first heard of 1 HCV in the early to mid 2000’s, over a decade after the virus was named and long after they had started injecting: [I first heard of HCV] just a few years ago. My mate said: “you’re bound to get it. Everyone who injects has got HCV”... And I thought, you can’t die from it, can you. It didn’t really bother me. (Ros, HCV-) Ros framed HCV as non-fatal and ubiquitous; of limited concern. This view was shared by most participants, including those who were HCV negative: “Well if you’ve got it, it can’t be that bad. You can get rid of it” (Max HCV-), “People I know with HCV, it’s not a big deal to them” (Andy, HCV-), “I don’t think I’ve met one person that hasn’t got HCV ... it’s not a really scary thing because you can’t die of it” (Alice, HCV-). HCV transmission risk was additionally framed by participants as an abstract, nebulous concept, one which was difficult to conceptualise, especially when there was no visible evidence of blood or contamination: “I’ve cooked up in their dirty spoon. But I couldn’t actually see any blood in it” (Marco, HCV+). [I read] about using a clean water jug, it could be contaminated just because drawing up [with used works]. Even after I found out I didn’t take much notice of it. Why was that? Because it’s only things I can see. (Fred, HCV-) HCV transmission risks became even less tangible when intoxicated: “I think once you become drunk or unsober, risk has no meaning really does it?” (Giles, HCV-), and many expressed a fatalistic attitude towards acquisition: “My philosophy is if you’re going to get something, you’re going to get it” (Leeroy, HCV-). 1 Sterile equals sharp Given a framework of recent and de-prioritised HCV risk awareness, it is of interest to explore the personal logics that informed the safe injecting practices of the long term HCV negative participants. Seventeen (49%) of the 35 participants began injecting over 20 years ago when HCV had not been named and at the time the majority of these knew little about HIV, or did not conceptualise it as a relevant risk. Eleven (65%) of these 17 long-term injecting participants were HCV antibody negative, and significantly, they described their early motivations not to reuse or share works in relation to the sharpness rather than sterility of new needles: “Always using fresh needles every single time. Less blunt damage off it. I’ve always tried to do it” (Jeff, HCV-). Used needles were primarily conceptualised as blunt, therefore inefficient instruments, rather than as vectors of disease: I’m not going to use a pin [needle] more than once, once its punctured my skin twice that pin is dead now because it’s blunt, therefore I can’t share anyone else’s because it’s blunt already, that was one of the reasons. That was the main reason. (Andy, HCV-) Andy’s narrative is in the past and present tense. His current practices are framed in the light of an initial rationale regarding the utility of sharp needles to facilitate venous access and minimise injecting discomfort, one that has endured to the present day. Leeroy (HCV-), injecting and maintaining safe practices for 33 years, also referred to sterile needles in terms of their utility. This view was informed by a pivotal encounter with a drop in worker three decades ago: I just couldn’t [share]because once I had a needle and I dropped it and it barbed [bent], oh my God that hurt, it just ripped in to my arm. I went to a guy down the drop-in, and I told him and he says, “no mate, don’t do that, never use a used works, 1 never”, I says, “yeah?”, he says “yeah, every time you use it man it just barb’s with your skin, sometimes it can be tough” so I said, “yeah”, and I stopped. Leeroy was the only participant to describe the influence of provider advice on his injecting practice. The advice given in this instance is unusual in terms of current harm reduction rhetoric that equates the use of ‘used works’ with disease transmission and personal (ir)responsibility rather than injecting pragmatics [20]. Indeed, if we view narrative as a self presentation device, informed by social norms and expectations [27] it is significant that so many participants spoke of (not) sharing in terms of injecting utility over disease prevention: “Well you could [share] but then it would probably be blunt an’ all, you know they do get blunt and then that hurts more” (Max, HCV-). Giles, a service user representative, frames this emphasis in terms of the pragmatic priorities affecting PWID: People would rather use clean works because they’re sharp for a start so, you know, they’re not going to be blunt. But does the message get through? Because hep C, you know: “yeah hep C, so what. I’m not going to drop down dead tomorrow. (Giles, HCV-) Giles speaks of the visibility and temporality of HCV, adding “[HCV] is not something you see just at the moment”. This distinction between the visible and invisible as well as short term and long term risks reflects participants’ conceptualisations of HCV and transmission risk as nebulous, abstract, and of minimal short term concern. Venous access Facilitating venous access, and minimising the pain and length of injection time, was a primary concern for participants. All described varying degrees of injecting difficulty. This is not surprising considering the average injecting trajectory of participants was 19 years and is 1 in line with prior research reporting rapid venous sclerosis (the narrowing and hardening of veins) among London injectors, associated with a rise in crack injecting [28] and the overuse of citric acid in heroin preparation [29]. All but three male participants injected primarily in their legs, feet, hands, neck and groin: “I got to the point where I had nowhere to shoot up at all and my arms were ruined” (Tom, HCV-). The often lengthy process of trying to find a patent vein was described by many as a considerable source of frustration and physical pain: “I used to go in my foot, but it was fuckin’ sore” (Cath, HCV+). “I’d go through a bunch of syringes ‘cause they’d all get dulled out. I mean hours. Extreme pain, bad stuff. Nightmarish” (Jeff, HCV-). The three male participants who accessed veins in their arms were HCV negative and had been injecting for 18, 27 and 34 years, although the latter also accessed his femoral vein. As well as using sterile needles, they spoke of site rotation as a tactic for maintaining access: “I don’t go in the same place every time” (Kyle, HCV-), “I vary location a lot, you never inject in the same place, you get good at needlework” (Adam, HCV-). Difficulty injecting increases risk A lengthy injection process comprising the use of multiple syringes, described by Jeff above, can increase the amount of blood in the environment: “Watching [friend] getting a hit, he’d have blood all over him and he’d still be at it” (Andy, HCV-). After multiple injection attempts the drug mixture can become congealed with blood, and in these circumstances participants describe re-heating and re-filtering the mixture before transferring it to a new syringe: “I’ve squirted my blood and that back in the spoon and re-cooked it and it goes all black and horrible” (Fred, HCV-). This can lead to increased contamination of spoons, filters and water, enhancing HCV transmission risk. 1 The sclerosis of peripheral veins, desperation occasioned by trying to find a patent vein, and loss of drug mixture during failed injection and re-filtering attempts resulted in 17 (49%) of the participants turning to the primary use of their femoral vein. Femoral vein use, or groin injecting, is associated with an increased risk of complications such as deep vein thrombosis, leg ulcers and, in some cases, amputation [30]. Participants appeared well aware of these risks, and generally referred to groin injecting as a last resort: “It really was terrifying for me to go there ... It was the need to inject, wanting the hit that put me there” (Sandra, HCV-). Other participants identified the femoral vein as a limit, as having crossed a line in injecting practice: “I’m very scared to go in my legs or groin, I don’t do it” (Sally, HCV+), “It’s [groin injecting] just too fucking scary. There’s too much to go wrong there ... I don’t want to think about what would happen if I don’t have anywhere else to go” (Jeff, HCV-). Intervention needs and missed opportunities The loss of peripheral veins and potential risks associated with a transition to groin injecting were of primary concern to participants. Advice and information on how to avoid venous sclerosis, and how to find and safely access less visible veins, was desired by the majority. Participants, however, had little knowledge of where to access this help or, for those who had tried, had not found it forthcoming: Will they [the drug and alcohol service] help you to find veins in other places? No. You know, for you to ask, no, because they will immediately go, “oh well, try smoking”. And, you know, they don’t get it. Fucking hell, smoking! (Tony, HCV+) For participants who had no desire to transition away from injecting, encouragement to do so only caused further alienation and disengagement from services. Instances such as Tony relates above were not uncommon, and represent valuable missed intervention opportunities on the part of service providers: “I’ve been to medical people and asked them, I said ‘look I 1 can’t [get a vein]’ and they say ‘well the only way is to snort it’” (Malcolm, HCV-). Service deficits were made manifest in the interview situation, with two participants seeking unsolicited injecting advice from the first author: “Sometimes I just can’t get [the femoral vein] look, I got two fingers here, can you tell me where the best place is to go?” (Helene, HCV+); “Just show me how to bang up in my groin!” (Ben, HCV-). Participants described gleaning information from opportunistically sighted resources: “[I saw] a poster of a man and he showed all his veins and his arteries, and it’s the closest I’ve ever seen to someone telling me” (Fred, HCV-), and having learnt – too late – from experience: “If I had known now what I knew then, I probably might still have my main line veins” (Fred, HCV-). Discussion The facilitation of venous access and minimisation of injecting damage and discomfort was evoked by the long-term HCV negative participants as an initial and enduring rationale for safe injecting practices. In this way venous care can be seen as an indirect technology of HCV prevention, one which may be harnessed by services to engage with PWID in a novel way. This research focus is timely, given indications of viral prevention fatigue or unconcern among PWID [17], many of whom report prioritising pragmatic concrete short term concerns over less tangible long term health issues [13, 14]. There has been scant social science research which makes connections between the pragmatic short term concerns of PWID and HCV prevention. A United States study has, however, found links between the pragmatic concerns of people who inject black tar heroin (BTH) and HIV protection [31, cf. 32]. BTH leaves a residue in the syringe, necessitating vigorous flushing to prevent the syringe mechanism and needle from clogging. This has the direct (intended) effect of keeping the syringe mechanism working and the indirect (unintended) 1 effect of reducing the amount of residual blood in the syringe, thus reducing HIV transmission potential [31]. In line with this analysis, for our participants the use of sterile needles was directly effective in enhancing venous access and indirectly effective in minimising the reuse of syringes, thus reducing HCV transmission potential. The narrow focus of much epidemiological HCV prevention research means that connections between seemingly unrelated direct and indirect effects can be missed. A broad-based qualitative approach that addresses protective, as well as risk, factors is uniquely placed to uncover and explore these connections. Evident in this research were the missed intervention opportunities when participants sought, but were unable to find, help with venous access and care. Difficult peripheral venous access not only creates more blood in the environment, enhancing HCV risk, but can cause a great deal of anxiety for PWID and may lead to a transition to femoral vein injecting, with its attendant high risks. There is an urgent need for workforce capacity building in relation to the provision of non-stigmatizing easily accessible information and advice about venous care and access. Such services would potentially help PWID to preserve their peripheral veins, lessen the need for a transition to groin injecting, improve the use of sterile (i.e. sharp) needles and provide points of contact for the dissemination of other safe injecting information. The protective interrelationship of direct and indirect effects can be effectively drawn upon in the development of novel harm reduction approaches. There is a case to be made for a move away from HCV behavioural risk avoidance interventions that presuppose a rational concern with long term health outcomes, and utilise a language of fear, infection and risk, to interventions that appeal to the pragmatic and short term concerns of PWID. Safe injecting messages based on viral avoidance may be perceived as pathologising and further alienate 1 some PWID, especially those who are already infected with HCV, from accessing services [21]. Health-care interventions, such as safe-sex campaigns, are increasingly recognising the benefits of focusing on the short term and pragmatic when engaging with their target populations [22, 23]. This is also evidenced in a new generation of British smoking cessation campaigns which focus on attractiveness and virility concerns, rather than long term outcomes such as cancer and heart disease, in messages aimed at younger smokers [33]. There is a need for harm reduction initiatives to re-engage PWID, especially those who feel that their needs are not being met by current services. As demonstrated by the narratives of the long-term London injectors, there is an unmet desire for non-judgemental venous care and access advice. Enhanced service provision and positive vein care messaging has the potential to resonate with injectors who are jaded or confused by HCV prevention messages, and may provide a hook with which to provide other health protective interventions. Conclusion These findings highlight the importance of taking a broader view than a transmission riskbased focus when considering HCV interventions. Many of the participants who had remained HCV negative over the long term were careful not to share needles and syringes, however, the motivations for this practice were likely to stem from concerns about venous access. Current HCV prevention interventions have failed to stem the high HCV incidence and prevalence among PWID. Our findings show that HCV prevention may usefully learn from other health promotion interventions, and by engaging with the pragmatic and the shortterm, attract PWID in a way that a focus on long term health outcomes might not. 1 Acknowledgements The authors would like to thank the participants of this study, fieldworker Greg Holloway and recruiting services Lorraine Hewitt House, Islington Primary Care Practice and Cedar’s Road Hostel. Also, to acknowledge the originator of the Staying Safe Study concept, Samuel Friedman, and the input of international collaborators Carla Treloar and Lisa Maher. The study was funded by the Economic and Social Research Council and the Centre for Research on Drugs and Health Behaviour receives core funding support from the Department of Health National Coordinating Centre for Research Capacity Development. 1 References 1. 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