- Email: [email protected]
Hepatitis C meanings and preventive strategies among street-involved young injection drug users in Montréal
International Journal of Drug Policy 18 (2007) 397–405
Research paper
Hepatitis C meanings and preventive strategies among street-involved young injection drug users in Montr´eal ´ ´ Nonn a , Nancy Haley b,c,d , Joseph Cox b,c Elise Roy a,b,c,∗ , Eva a
Service de toxicomanie, Facult´e de m´edecine et des sciences de la sant´e, Universit´e de Sherbrooke, Longueuil, Qu´ebec, Canada b Direction de sant´ e publique, Montr´eal, Qu´ebec, Canada c McGill University, Montr´ eal, Qu´ebec, Canada d D´ epartement de p´ediatrie, Facult´e de m´edecine, Universit´e de Montr´eal, Montr´eal, Qu´ebec, Canada Received 28 September 2006; received in revised form 2 February 2007; accepted 12 February 2007
Abstract Objective: To examine what hepatitis C virus (HCV) infection means to street-involved young IDUs (SYIDUs) and how this impacts on their health behaviours, based on social contexts in which they live. Methods: Thirty-nine SYIDUs with HCV infection participated in in-depth interviews. A typology was built founded on SYIDUs’ street life and drug use experiences. The meanings given to hepatitis C and resulting health behaviours were examined through these experiences. Results: In Montr´eal, “total” experience is characterised by an exclusive social relationship with the street milieu and by intensive drug consumption. In this milieu, where most injectors are HCV-infected but asymptomatic, getting infected is considered trivial. Compared to other more immediate threats, HCV infection and its long-term consequences are lesser concerns. Efforts to inject safely are made to avoid HIV. When these SYIDUs learn they are HCV-infected, they do not make important lifestyle changes. However, since they worry about transmitting the infection to others, they notify their injection partners that they are infected. SYIDUs living a “controlled” experience preserve some stability in their lives and control their consumption. They maintain relationships within mainstream society and have beliefs reflecting these links. They view HCV infection as a serious disease and make significant efforts to avoid sharing their injection equipment and thus remain healthy. When they learn they are HCV-infected, they engage in “liver friendly” behaviours but are not ready to stop injecting. The “disengaging” experience is that of youth who start to disengage from drug injection. They leave the drug milieu and develop new relationships within mainstream society. They adopt new values regarding health. HCV infection is viewed as requiring significant changes in strategies aimed at protecting themselves and others. Conclusion: This research sheds light on the fundamentally social nature of hepatitis C. SYIDUs’ HCV experiences, which evolve in parallel with their street life and consumption trajectories, provide numerous occasions where they can be exposed to prevention messages. © 2007 Elsevier B.V. All rights reserved. Keywords: Street youth; Young IDU; Hepatitis C; Preventive strategies; Qualitative research
Introduction Worldwide, drug injection is a major cause of hepatitis C virus infection (HCV). Among IDUs, observed prevalence rates typically range between 60 and 80 percent, and ∗ Corresponding author at: Universit´ e de Sherbrooke, Campus de Longueuil, Programme d’´etudes et de recherche en toxicomanie, Facult´e de m´edecine et des sciences de la sant´e, 1111 Saint-Charles Ouest, Tour Ouest, Bureau 500, Longueuil, Qu´ebec J4K 5G4, Canada. Tel.: +1 450 463 1835x61823; fax: +1 450 463 6578. ´ Roy). E-mail address: [email protected] (E.
0955-3959/$ – see front matter © 2007 Elsevier B.V. All rights reserved. doi:10.1016/j.drugpo.2007.02.005
incidence rates between 10 and 40 per 100 person-years (Ministerial Advisory Committee on AIDS, Sexual Health and Hepatitis C Sub-Committee, 2006; National Institutes of Health, 2002; Roy et al., 2002). This situation is of great concern, especially since preventive strategies developed to counter HIV do not seem to suffice to control the hepatitis C epidemic (Crofts, Aitken, & Kaldor, 1999; Vlahov, Fuller, Ompad, Galea, & Des Jarlais, 2004). Moreover, despite the fact that excluding IDUs from HCV treatment is no longer policy in many countries, IDUs’ access to therapies for the infection remains problematic (Edlin et al., 2005; Fischer,
398
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
Haydon, Rehm, Krajden, & Reimer, 2004; Stoov´e, Gifford, & Dore, 2005). The situation is all the more complicated because many of them are reluctant to consult physicians and worry about suffering discrimination, which they have often experienced as drug users (Aitken, Kerger, & Crofts, 2002; Crofts, Louie, & Loff, 1997; Day, Ross, & Dolan, 2003; Doab, Treloar, & Dore, 2005; Hepworth & Krug, 1999; Hunt & Derricott, 2001; Krug, 1995; Treloar, Hopwood, & Loveday, 2002). It is increasingly evident that services designed for IDUs are poorly adapted to their needs with respect to hepatitis C. In this context, it is imperative to understand what hepatitis C signifies to them and what this represents in terms of risk management, as well as disease management, once they are infected. Some important researchers have shed light on the influence of social contexts on how meanings of hepatitis C are constructed, and the resulting health behaviours among IDUs (Copeland, 2004; Davis & Rhodes, 2004; Grundy & Beeching, 2004; Hepworth & Krug, 1999; Krug, 1995; Rhodes, Davis, & Judd, 2004; Tompkins, Wright, & Jones, 2005). According to this literature, the emphasis that has been put on HIV in prevention policy has contributed to trivialising hepatitis C in the eyes of IDUs. Moreover in their environment, where hepatitis C is extremely common, IDUs perceive the infection as an unavoidable consequence of drug injection (Rhodes et al., 2004). By contrast, according to some studies conducted among infected IDUs, those who associate with non-IDU milieux see hepatitis C as a serious infection that one should avoid transmitting (Grundy & Beeching, 2004; Hepworth & Krug, 1999). This is problematic for many IDUs since when they reveal their seropositive status to others, it amounts to admitting they have injected drugs, which is still stigmatizing in most non-IDU settings (Copeland, 2004; Hepworth & Krug, 1999; Tompkins et al., 2005). Due to their living conditions, street-involved young IDUs are at very high risk of acquiring or transmitting HCV (Garfein et al., 1998; Hahn et al., 2002; Miller et al., 2002). Development of new interventions for this population is a priority. We undertook this study to examine what hepatitis C means to young IDUs and how this impacts on their health behaviours, based on the social contexts in which they live and consume drugs.
Methodology The present research is a qualitative study based on the symbolic interactionism perspective (Becker, 1963; Blumer, 1986). According to this perspective, human beings are creative social actors who, given the sociocultural conditions in which they live, act according to the meanings they assign to other people’s expectations and actions. These meanings are formed during social interactions among individuals from different socially situated groups. This theoretical perspective has greatly influenced some sociologists who have studied the sociocultural dimensions of diseases, particularly
the complex relationship between the meanings of a disease and management of daily life (Bury, 1982; Charmaz, 1990; Corbin & Strauss, 1985; Goffman, 1963; Herzlich & Pierret, 1987; Sontag, 1978, 1989; Strauss & Glaser, 1975; Williams, 2000). From this theoretical perspective, in this study, we focused on the social processes and interactions that lead to adoption of health behaviours in relation to hepatitis C among young street-involved IDUs. Setting and study sample This study was conducted in Montr´eal, Canada, where needle exchange programmes have been implemented since 1989. As we have shown previously, in this setting, streetinvolved young IDUs care about safe injection. Risky practices occur primarily in specific contexts such as intimate relationships, living on the street, and cocaine-binging episodes where making sure that all pieces of injection equipment are sterile is difficult (Roy, Nonn, Haley, & Morissette, 2003). The targeted study sample was street-involved young IDUs (less than 30 years old) who were HCV antibodypositive. With regards to injection drug use, eligible youth had to be currently injecting drugs or be in the process of quitting injection, either by undergoing therapy or through their own means. Youth were considered “street-involved” if they had, in the last year, either regularly used the services of street youth agencies or been without a place to sleep more than once. Participants were selected based on relevant strategic variables: age, sex, and time since youth learned that they were HCV-infected. We also proceeded with theoretical sampling according to the techniques used in grounded theory (Glaser & Strauss, 1967; Strauss & Corbin, 1990). Thus, based on new elements that emerged from the interviews, namely the importance of therapies in the construction of HCV meanings, additional participants were recruited. HIV-infected youth were excluded from the study since we believed that the presence of HIV infection could significantly influence their experiences with hepatitis C. Participants were recruited from an ongoing cohort study on HIV and HCV incidence among street youth and from methadone programmes and medical clinics. The study sample included 39 participants, 23 males and 16 females, 18–27 years old. They had been injecting for 2–10 years, and the length of time they had known they were infected with HCV varied from 2 weeks to 10 years, including 9 participants who had known for a year or less. The interviews In-depth interviews were conducted, covering the period between the time participants started injecting and the moment they learnt they were infected; then the moment they were tested; finally the period during which they have been living with the infection. We asked participants to speak about their experiences regarding the three main themes of the
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
study: drug consumption, street life and hepatitis C. Different topics were addressed systematically: living conditions, social networks, substance use (alcohol and drugs), points of view regarding hepatitis C, strategies to prevent HCV acquisition, experiences of HCV testing, and strategies to maintain health and prevent transmission to others, once infected. The interviews were conducted between February 2004 and June 2005. All interviews were recorded and transcribed. A sum of $25 was given to participants. The protocol was approved by the Institutional Review Board of the Faculty of Medicine at McGill University. Analysis We began the analysis by identifying the “smallest units of meanings” related to the main themes under study for each interview. Subsequently, consistencies and variations in participants’ accounts were brought to light through constant comparative analysis. This analysis enabled us to build a typology founded on young IDUs’ street life and drug use experiences. The meanings of hepatitis C and the resulting health behaviours were then examined through these experiences. “Typologies are useful pragmatic creations. They help us make sense of, think about, and bring order to varied segments of our experience”. By focussing on the most significant elements, they lessen dimensional complexities and “highlight salient similarities and differences of phenomena” (Schneider & Conrad, 1981). Typologies are not systems of classification and do not claim to be exhaustive. Typologies do not aim to distinguish one individual from another according to certain criteria but rather to describe different types of experiences that people can have at a given point in their lives. Therefore it is not impossible that a young IDU who goes through a certain experience may later move toward other types of experiences.
399
are in very precarious social and health conditions, often literally living in the streets. All their activities relate to their drug consumption. I stole to be able to use. A lot of people prostitute themselves, others steal, and others beg. You can sell drugs too. Everyone figures out what to do to be able to use drugs; everyone has their own way of finding money. (JeanFranc¸ois, 22/M/8)1 In this case, young IDUs’ social interactions are restricted to street people who inject or who make consumption possible. They get together to buy drugs less expensively, to avoid overdosing or to elude police when they are committing an illegal act. Young IDUs who live this experience can hardly develop intimate relationships or maintain links with people who are not drug users. People, when I was in the streets, people I hung out with, it was people who were in the streets. . . I never had a friend who was settled. (Francis, 18/M/2) Although these young IDUs are aware of their uncontrolled consumption and the risks they take, consistent safe utilisation of injection equipment is difficult. Periods of intense consumption such as during cocaine binges are times of great vulnerability when risky practices are common. When you’re having cravings, if you have a quarter [gram] in your hands. . . Even if you’re aware of the risks, your body’s obsession makes you do things that your mind wouldn’t do normally. It’s really because of coke that hepatitis is spreading. (C´edric, 20/M/3) Homeless episodes are frequent among youth living the “total” experience; these occurrences lead them to inject in the street where the conditions necessary for safe injection are lacking.
Results We identified three different types of experiences. The first is characterised by an intense relationship with the streets and drug use; the second involves limited or controlled contact with the streets and drug use; the third type is characterised by a process of disengaging from the street and drug consumption, and of drawing closer to mainstream society.
I live in an apartment, I have four walls, I have all my stuff, I’m clean. But when you’re in the streets all you have is a backpack, and what you have, you share ‘cause that’s all ´ you have. You know? (Etienne, 25/M/4) Faced with the difficulty of injecting safely, young IDUs come to consider that it is very difficult, or even impossible, to avoid hepatitis C. The fact that many of their injection partners are infected actually adds support to this perception.
“Total” experience The first type of experience is characterised by an exclusive social relationship with the street milieu and by intensive drug consumption. It corresponds to what Castel (1998) calls a “total” experience since it controls all the most significant areas of an individual’s life, and taints all of his or her social relations. When young IDUs go through this experience, they
It’s almost normal to have hepatitis C for us. It’s almost sure that if you’re gonna inject, you’ll get it one day. (Nadia, 25/F/3) 1 The first number after a participant’s name represents his or her age, the second his or her sex, and the third the number of years during which youth injected drugs. All names are fictitious.
400
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
Fatalism leads some young IDUs to trivialise the consequences of their risk-taking behaviours because they believe these are unavoidable.
She told me: “Everything looks fine, except it’s written positive next to hepatitis C.” So I said to her, “Can I see? I hope I don’t have AIDS.” (Yannick, 22/M/5)
I had trivialised it [hepatitis C], and maybe it was like that that I came up with reasons to share with people. . . at least it’s not AIDS, you won’t die of hepatitis C. (Peter, 25/M/9)
Delighted to hear they are HIV-negative, these young IDUs pay little attention to what the nurse or physician tells them. They go back to their milieu where their friends reassure them and “confirm” that hepatitis C is not serious at all. This new status, being an IDU with hepatitis C, can even have a positive significance since it now enables the youth to feel just like everyone else in his milieu.
The comparison of hepatitis C to other problems linked to drug consumption and living conditions plays an important role in the meaning these youth assign to the infection. One of these problems is HIV which “terrorises” many of them despite the fact that it is not that common in their milieu. In young IDUs’ eyes, getting HIV infection is much worse than getting HCV. With hepatitis, if you take care of yourself, you can beat it. With AIDS, if you catch the flu, you’ll get pneumonia and you’ll die. It’s much more serious. (St´ephanie, 22/F/5) Young IDUs also compare the severity of hepatitis C with other problems they experience regularly such as drug overdose. In this context, they are not overly concerned with health problems that may not develop for many years such as those linked to hepatitis C. When you take drugs all the time, you don’t really think you’ll live long enough to die of hepatitis C, it’s something that lasts a long time. (. . .) I’ve had 7 overdoses, and I told myself that I would die of that much sooner than I would die of hepatitis C. (Sabrina, 24/F/6) When young IDUs live the “total” experience, in their eyes, there is no future and therefore hepatitis C treatment is not an option they consider. Besides, most of them believe they are not eligible for treatment or that it would be too difficult for them. Consequently, they see no reason to undergo testing to determine their serological status. Everybody I know who tried the treatment told me that it could make you feel depressed, sick, headachy, dizzy, and stuff like that. I thought if it makes you feel depressed, well, I just came out of a phase where I wanted to kill myself, (. . .) so I’d rather not try the treatment, so if I don’t want the treatment, I don’t see why I should go get checked. (St´ephanie, 22/F/5) Despite their expressed lack of interest, these young IDUs have already been tested, either when participating in studies or when visiting services where HCV tests are done routinely, usually in combination with HIV testing. In our study, since having HIV infection was an exclusion criteria, all participants were HIV-negative. The young IDUs conveyed how relieved they felt, when they were given their test results, to learn they “only” had hepatitis C.
It’s almost like another stage to go through. Once you have hepatitis C . . .you’ll be like . . .you’ll be one of the gang, like. (Pat, 22/M/2) After the test, most of these young IDUs do nothing special for their health and continue using drugs and alcohol. Despite the fact that they are infected, it is nonetheless difficult for them to change their injection practices, and they often use other IDUs’ equipment to inject. However, many of them make an effort to avoid infecting others. When they inject, it is difficult for them to refuse to lend their equipment to people who are experiencing withdrawal and ask to borrow it. They then choose to notify these partners that they are infected, giving borrowers the responsibility to decide whether or not to use the injection equipment. I’m careful. When I cut myself, I’m really careful! I’m a little paranoid about that, like, when I cut myself, I’m really careful about what I touch, I go wash my hands, put on a band aid, it’s a matter of principle. (C´edric, 20/M/3) (. . .) he was using my old [syringe] he knew the risks. I didn’t take the responsibility. He knows what he’s getting into. (. . .) (C´edric, 20/M/3) “Controlled” experience Although they inject drugs and sometimes end up in the streets, some young IDUs nevertheless preserve certain stability in their lives and control their consumption. Those who live this experience succeed in limiting the number of days they consume or the quantity they use in a day. It’s like, I use 3 days, then I stop. I start over but, y’know, I’m not someone whose gonna spend a week on dope, like. (No´emi, 24/F/8) These youth maintain connections with mainstream society, have hobbies, are in music bands, make jewellery or engage in other creative activities, and are not ready to lose these positive assets because of intensive substance use. Most of the time, they live in an apartment, either with their parents or with friends, and have a job or attend school. In these milieux, hepatitis C is seen as a serious disease that people
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
are afraid to contract; young IDUs thus consider hepatitis C prevention and health as important issues. My step-father said: “I’d like to bring you to the hospital for blood tests, for a check-up. We live with you and we’d like to know.” (. . .) my mother was going crazy. (Bruno, 24/M/9) These youth make significant efforts to avoid sharing their injection equipment and so remain healthy. Having access to an apartment, they are generally able to control the sterility of their equipment. I’ve never used someone else’s water, syringe or spoon. It’s a new needle each time, I always do it at home; it’s rare that I shoot up outside. (Max, 24/M/4) Considering that they pay particular attention to the safety of their injections, most of these youth think they know the moment in which they contracted the virus. They take steps themselves to get tested. Undergoing tests “is normal when you inject” and this is true even if “you do everything possible” to avoid infection. I got it [the test] to be sure that I didn’t have anything. I think it’s normal to get tested often when you don’t live a normal life (laughs) when you shoot up. (Nathalie, 20/F/2) These young IDUs assert it is difficult for them to consistently inject safely. Thus they are concerned with the possibility of being infected with HCV and infecting others without knowing it. A number of them get tested to protect their partners, should they be infected. You can spread it too [if you have it] you have to be careful too, so that you don’t give it to other people. . . (Benoˆıt, 24/M/2) At the moment when they find out they are infected with HCV, youth living the “controlled” experience generally pay attention to the information they are given by healthcare providers. Some of them try to find out more about the consequences of hepatitis C and the treatments available. I thought I was going to be sick. I started reading a bit about it. I started to understand, I started getting little pamphlets. (No´emi, 24/F/8) While interactions with mainstream society may help raise young IDUs’ awareness of the risks and significance of hepatitis C, it also poses some dilemmas. In IDU networks, having HCV is considered trivial and sometimes is even seen as proof one belongs to the group. This is not the case in “straight” settings, where having hepatitis C is both a serious problem and often means someone is a “junkie”. Telling parents that one is infected then becomes a challenge.
401
There’s a cure, but it’s not 100% sure, and it’s hard to tell your friends and your family. Telling your mother “I have hepatitis” is hard. You almost have to tell her that you inject drugs at the same time. (Benoˆıt, 24/M/2) Contacts with health service providers are not simple either. Some youth have reported that health professionals were judgmental. But doctors, sometimes the doctors you see at a normal hospital, and you say you have hepatitis C, they look at you with suspicion, it’s associated. . . hepatitis C, it’s rare that someone has it and didn’t get it because of injecting. (Ariane, 23/F/5) In addition to medical visits, these young IDUs make efforts to make significant changes in their lives once they have been infected. Although they are not ready to stop injecting, nonetheless they try to take up good lifestyle habits. I eat a lot more vegetables than before. I’ve always liked meat but vegetables, it’s . . .since I have hepatitis C. (John, 22/M/2) Avoiding spreading the virus is also very important for these youth. They make sure they are the only ones using their personal objects (razors, toothbrush). Some even break their needles once they have injected to resist requests from their injection partners. (. . .) I wouldn’t want anyone or one of my friends to catch it because of me, either accidentally, or because of lack of attention. (Benoˆıt, 24/M/2) “Disengaging” experience For most youth, street involvement and injection drug use are temporary experiences. Whether their experience has been “total” or “controlled”, after a few years, a number of them start disengaging from the streets and consumption. They undertake therapies to stop using drugs, apply for social assistance, get an apartment, look for work or make arrangements to return to school. These youth build longterm life projects, and think about starting a family and having children. Some embark on projects that enable them to transform a negative experience into a positive one (Castel, 1998; Goffman, 1963). I’ve moved on to something else. I want children. . . I would like to do documentaries. (. . .) I’d like to go and teach French all around the world. Really, there’s lot of things I feel like doing. (Maude, 23/F/6) In many cases, the disengagement process starts with, or is at least reinforced by, health problems that, rightly or wrongly, young IDUs attribute to hepatitis C. These problems
402
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
can contribute to their lack of pleasure in being in the streets and using drugs. I was sick of it (. . .), I was sick, I found out I had hepatitis C, I had to stop using [drugs]. It didn’t make sense anymore. (Maude, 23/F/6) Like youth who go through a “controlled” experience, those who “disengage” resume or develop relationships with people who do not consume and for whom being healthy is an important value. However, since they have more support in their new living conditions and environment, they are better able to apply these new values in their own lives. Based on these youth’s accounts, support programmes for drug users play an important role in the disengaging process. For that matter, it is often as participants in methadone programmes that the young IDUs find out they have HCV and, for the first time, hear about the possibility of receiving HCV treatment. Most of these youth see their physicians regularly to have their liver enzymes monitored and eventually ready themselves for treatment. Dr. D. (. . .), well he’s the best doctor in town, as far as I’m concerned. He specialises in hepatitis, so I went back to see him after. That’s when he told me that he’d do follow-up ´ and that he’d keep track of my enzymes. (Etienne, 25/M/4) For young IDUs living the “disengaging” experience, adopting healthy living habits is often the first step towards a stable life. They discover the benefits of eating well or take natural products to improve their health. However, while they make efforts to improve their health, some of them nonetheless find it difficult to stop drinking alcohol. Although they are aware that this habit can damage the liver, for them alcohol represents a substitute for so-called “hard” drugs. Quitting alcohol, often the last step in the disengagement process, poses a major obstacle to receiving hepatitis C treatment. I stopped everything, but I started drinking. I used to do coke and I was doing way to much. Today I just drink too much. I smoke pot like a chimney and I drink. . . Christ do ´ I drink. . . (Etienne, 25/M/4) I never really wanted to do the treatments because I found out you had to stop drinking for 6 months, and then for a year, and then you had to wait another 6 months before maybe seeing any results. So you have to stop living for two years. . . (Maude, 23/F/6) Similar to young IDUs described earlier (“total” and “controlled”), these youth are careful about how they use their personal objects. They also inform their friends and family about their HCV status and how to prevent transmission. However, they have some difficulty negotiating their HCV status with noninjectors with whom they have intimate relationships. Unlike the other youth, they cannot count on their
street friends for comfort since they have severed all links with this milieu. Consequently, they are more exposed to being judged or even rejected by non-IDUs, which they now wish to join. The older I got, the more I changed environments. Well, there were fewer and fewer people around me who had hepatitis and at one point, there weren’t any and I was the only one to have it. (Maude, 23/F/6)
Discussion and conclusion Our study is one of the few qualitative investigations that look at what hepatitis C virus (HCV) infection means to street-involved young IDUs and how this impacts on their health behaviours. One of our main findings is that the meanings and behaviours linked to hepatitis C among young IDUs vary according to the relationships they have with the streets and with drug consumption. Youth who are going through an intense period of consumption and street involvement are those who are less concerned about hepatitis C. In their eyes, the distant threat of possible liver disease does not carry much weight when compared with the numerous difficulties they face in their daily lives. However, our study highlights that these IDUs are not indifferent to hepatitis C. Like youth whose consumption is controlled or those who try to stop using, they worry about transmitting their infection. It may seem paradoxical that these young IDUs do not appear to be worried about acquiring HCV but then, once infected, they are concerned about transmitting the infection. We believe this is not a paradox given the conditions in which they live. For these youth, not only is avoiding contracting HCV very difficult but it is not a priority compared with other risks such as the risk of a fatal drug overdose. However, once infected with HCV, it is not a problem for them to divulge their status to injection partners and they make a point of doing it. Our finding that youth constantly compare hepatitis C to HIV is similar to the results of Rhodes et al. (2004), Davis and Rhodes (2004), and Davis, Rhodes, and Martin (2004) and confirms that the meaning of HCV has been socially constructed in the shadow of HIV. Moreover, our results show how social interactions influence the construction of meanings of hepatitis C. Depending on an IDUs’ environment and his or her interactions with it, the significance of hepatitis C differs. As a result, we have observed, as have others (Grundy & Beeching, 2004; Hepworth & Krug, 1999), that IDUs who have relationships with people in “mainstream society” do not perceive hepatitis C as a trivial affliction and therefore they try to avoid aggravating the state of their health. Their understanding of hepatitis C is also influenced by the health services that young IDUs frequent when they are more stable. The growing importance for these young IDUs to meet with their physicians regularly and to follow their liver enzymes speaks volumes.
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
However, while a certain level of integration into mainstream society helps youth understand the health significance of hepatitis C and act accordingly, this does not bring only benefits. As some researchers have noted (Copeland, 2004; Tompkins et al., 2005), fear of double stigma—having hepatitis C and, especially, being identified as an IDU—is a heavy burden. Like sociologists who studied the sociocultural aspects of diseases (Bury, 1982; Charmaz, 1990; Corbin & Strauss, 1985; Goffman, 1963; Herzlich & Pierret, 1987; Sontag, 1978, 1989; Strauss & Glaser, 1975; Williams, 2000), we have observed links among living conditions, meanings of the disease and disease management. Among young IDUs in Montr´eal, problems with hepatitis C management are exacerbated by the constraints inflicted both by the streets and by drug use. Consequently, it is very difficult for youth who are going through periods of intense consumption and street-involvement to manage the risks related to hepatitis C. As many studies have demonstrated (Bourgois, 1998a,b; Koester, 1994; Latkin et al., 1994; Ouellet, Jiminez, Johnson, & Wiebel, 1991; Roy et al., 2003; Zule, 1992), people without a fixed address easily find themselves on the streets or in public places when they “have” to inject drugs. Existing physical conditions make safe injection very difficult. Furthermore, disease management, when it arises, is very challenging. It is extremely complicated to take care of one’s health when living in the streets. In cases of more stable experiences, the situation is different. It is easier to assemble conditions that are favourable to safe injecting practices and to staying healthy. Youth who ordinarily have a stable place to sleep can store their injection equipment and inject in safer conditions. Once they have HCV, it is less complicated to successfully maintain safe behaviours and healthier lifestyle, see a physician or start therapy. Despite the difficulties inherent to managing hepatitis C, related either to infection prevention or its treatment among young IDUs who are going through periods of intense consumption and street-involvement, our results suggest there is hope. It seems that to better reach them, we must develop diverse interventions that are adapted to their various needs. Stable living conditions appear to be a significant contributor to preventing and controlling hepatitis C. Therefore, for youth who are going through a period of intense consumption and street-involvement, measures designed to improve their living conditions, notably through better access to housing, could assist their attempts to inject safely and avoid HCV transmission. The fact that the efforts young IDUs make are mostly geared towards averting HIV is not bad news in and of itself. As we showed in an other study (Roy et al., 2003), to succeed, young IDUs go to needle exchanges programs. It is up to community workers and health professionals to use this opportunity to reinforce and support safe behaviours, offer counselling on safer injection and hepatitis C prevention, and if needed, talk about treatment. Moreover, we echo
403
the opinion of Loxley, Bolleter, and Carruthers (2001) that this event should be not only a medical but also a psychosocial intervention. These encounters represent excellent occasions for brief and targeted interventions aimed at supporting young IDUs who wish to change their lifestyles and either consume in a more controlled fashion or stop using entirely, and to offer support to help them achieve stable housing. Young IDUs who have HCV and who adopt a more stable lifestyle are motivated to adopt “liver friendly” behaviours. It is vital to support their efforts by providing appropriate counselling and simple measures that are adapted to their precarious situations. For example, in Qu´ebec, a book of recipes adapted to the tastes and lifestyles of street-involved youth with HCV was recently published (Miron, Sarra-Bournet, & D’Antoni, 2005). Lastly, treatment is an option that should not be jettisoned. Whatever their situation, all IDUs should be informed of the options available to them so they can make informed decisions and get medical treatment if indicated. Again, good living conditions are essential and, in this regard, supporting housing for young IDUs should be part of the intervention strategies. Some limitations of our study merit consideration. The advantage of the qualitative method resides in its capacity to delve deeper into certain dimensions that can influence a phenomenon, but does not allow for in-depth analysis of all possible aspects. In this study, we chose to focus on the social interactions of youth with their immediate environment. Also, the fact that participants’ accounts may have been influenced by a certain social desirability is another limit of our study. However, the interviewer’s supportive and nonjudgmental attitude certainly helped reduce the effect of this bias, which is proper to studies on socially undesirable behaviours. Finally, it should be noted that our data was collected in the urban milieu of Montr´eal. It is possible that the characteristics typifying hepatitis C meanings and preventive strategies among injection drug users may differ in other settings. To conclude, this research has shed light on the fundamentally social nature of hepatitis C among young IDUs. Their HCV experiences, which evolve in parallel with their street life and consumption trajectories, present numerous occasions where they can be exposed to prevention messages. Hepatitis C prevention and health promotion messages need to be individualized and meaningful for the youth, in accordance with their concerns and perspectives.
Acknowledgements We would like to thank, above all, the youth who shared their experiences to help us understand the issue of HCV from their perspective. This research was funded by the Canadian Institutes of Health Research.
404
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
References Aitken, C. K., Kerger, M., & Crofts, N. (2002). Peer-delivered hepatitis C testing and counselling: A means of improving the health of injecting drug users. Drug and Alcohol Review, 21, 33–37. Becker, H. S. (1963). Outsiders: Studies in the sociology of deviance. New York: Free Press. Blumer, H. (1986). Symbolic interactionism: Perspective and method. Berkeley: University of California Press. Bourgois, P. (1998a). The moral economies of homeless heroin addicts: Confronting ethnography, HIV risk, and everyday violence in San Francisco shooting encampments. Substance Use and Misuse, 33, 2323–2351. Bourgois, P. (1998b). Just another night in a shooting gallery. Theory, Culture & Society, 15, 37–66. Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4, 167–182. ´ Castel, R. (1998). Les sorties de la toxicomanie. Fribourg, Suisse: Editions Universitaires. Charmaz, K. (1990). Discovering’ chronic illness: Using grounded theory. Social Science and Medicine, 30, 1161–1172. Copeland, L. (2004). The drug user’s identity and how it relates to being hepatitis C antibody positive: A qualitative study. Drugs: Education, Prevention and Policy, 11, 129–147. Corbin, J., & Strauss, A. (1985). Managing chronic illness at home: Three lines of work. Qualitative Sociology, 8, 224–247. Crofts, N., Louie, R., & Loff, B. (1997). The next plague: Stigmatization and discrimination related to hepatitis C virus infection in Australia. Health and Human Rights, 2, 86–97. Crofts, N., Aitken, C. K., & Kaldor, J. M. (1999). The force of numbers: Why hepatitis C is spreading among Australian injecting drug users while HIV is not. Viewpoint. Medical Journal of Australia, 170, 220– 221. Davis, M., & Rhodes, T. (2004). Beyond prevention? Injecting drug user narratives about hepatitis C. International Journal of Drug Policy, 15, 123–131. Davis, M., Rhodes, T., & Martin, A. (2004). Preventing hepatitis C: ‘Common sense’, ‘the bug’ and other perspectives from the risk narratives of people who inject drugs. Social Science and Medicine, 59, 1807– 1818. Day, C., Ross, J., & Dolan, K. (2003). Hepatitis C-related discrimination among heroin users in Sydney: Drug user or hepatitis C discrimination? Drug and Alcohol Review, 22, 317–321. Doab, A., Treloar, C., & Dore, G. J. (2005). Knowledge and attitudes about treatment for hepatitis C virus infection and barriers to treatment among current injection drug users in Australia. Clinical Infectious Diseases, 40, S313–S320. Edlin, B. R., Kresina, T. F., Raymond, D. B., Carden, M. R., Gourevitch, M. N., Rich, J. D., et al. (2005). Overcoming barriers to prevention, care, and treatment of hepatitis C in illicit drug users. Clinical Infectious Diseases, 40, S276–S285. Fischer, B., Haydon, E., Rehm, J., Krajden, M., & Reimer, J. (2004). Injection drug use and the hepatitis C virus: Considerations for a targeted treatment approach—The Case Study of Canada. Journal of Urban Health, 81, 428–447. Garfein, R. S., Doherty, M. C., Monterroso, E. R., Thomas, D. L., Nelson, K. E., & Vlahov, D. (1998). Prevalence and incidence of hepatitis C virus infection among young adult injection drug users. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology, 18, S11–S19. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine Publication. Goffman, E. (1963). Stigma: Notes on the management of a spoiled identity. Englewood Cliff, NJ: Prentice Hall. Grundy, G., & Beeching, N. (2004). Understanding social stigma in women with hepatitis C. Nursing Standard, 19, 35–39. Hahn, J. A., Page-Shafer, K., Lum, P. J., Bourgois, P., Stein, E., Evans, J. L., et al. (2002). Hepatitis C virus seroconversion among young injection
drug users: Relationships and risks. Journal of Infectious Diseases, 1186, 1558–1564. Hepworth, J., & Krug, G. J. (1999). Hepatitis C. A socio-cultural perspective on the effects of a new virus on a community’s health. Journal of Health Psychology, 4, 237–246. Herzlich, C., & Pierret, J. (1987). In E. Foster (Ed.), Illness and self in society. Baltimore, Maryland: Johns Hopkins University Press. Hunt, N., & Derricott, J. (2001). Smackheads, crackheads and other junkies; dimensions of the stigma of drug use. In T. Mason, C. Watkins, & E. Whitehead (Eds.), Stigma and social exclusion in health care (pp. 190–205). London: Routledge. Koester, S. K. (1994). Copping, running, and paraphernalia laws: Contextual variables and needle risk behavior among injection drug users in Denver. Human Organization, 53, 287–295. Krug, G. J. (1995). Hepatitis C. Discursive domains and epistemic chasms. Journal of Contemporary Ethnography, 24, 299–322. Latkin, C., Mandell, W., Vlahov, D., Oziemkowska, M., Knowlton, A., & Celentano, D. (1994). My place, your place, and no place: Behavior settings as a risk factor for HIV-related injection practices of drug users in Baltimore, Maryland. American Journal of Community Psychology, 22, 415–430. Loxley, W., Bolleter, A., & Carruthers, S. J. (2001). Talking about testing: Opportunities for prevention in blood borne virus testing and vaccination with injectors. Perth, Western Australia: National Drug Research Institute, Curtin University of Technology. Miller, C. L., Johnston, C., Spittal, P. M., Li, K., Laliberte, N., Montaner, J. S., et al. (2002). Opportunities for prevention: Hepatitis C prevalence and incidence in a cohort of young injection drug users. Hepatology, 36, 737–742. Ministerial Advisory Committee on AIDS, Sexual Health and Hepatitis C Sub-Committee (2006). Hepatitis C virus projections working group: Estimates and projections of the hepatitis C virus epidemic in Australia 2006. Retrieved August 4, 2006, from http://www.carers.health.gov.au/ internet/wcms/publishing.nsf/Content/A6B2E9BE0AE3A249CA25720 20003E1D2/$File/hcvpwg.pdf. Miron, C., Sarra-Bournet, P., & D’Antoni, T. (2005). Raw vegetable flesh! Montr´eal. Qu´ebec: Public Health Agency of Canada. National Institutes of Health (NIH). (2002). Consensus development conference statement: Management of hepatitis C, June 10–12, 2002. Hepatology, 36, S3–S20. Ouellet, L. J., Jiminez, A. D., Johnson, W. A., & Wiebel, W. W. (1991). Shooting galleries and HIV disease: Variations in places for injecting illicit drugs. Crime and Delinquency, 37, 64–85. Rhodes, T., Davis, M., & Judd, A. (2004). Hepatitis C and its risk management among drug injectors in London: Renewing harm reduction in the context of uncertainty. Addiction, 99, 621–633. Roy, K., Hay, G., Andragetti, R., Taylor, A., Goldberg, D., & Wiessing, L. (2002). Monitoring hepatitis C virus infection among injecting drug users in the European Union: A review of the literature. Epidemiology and Infection, 129, 577–585. ´ Nonn, E., ´ Haley, N., & Morissette, C. (2003). Le “partage” des Roy, E., mat´eriels d’injection chez les jeunes usagers de drogues injectables de Montr´eal. Drogues, Sant´e et Soci´et´e, 2(1), 35–55. Schneider, J., & Conrad, P. (1981). Medical and sociological typologies: The case of epilepsy. Social Science & Medicine, 15A, 211– 219. Sontag, S. (1978). Illness as metaphor. New York: Farrar, Strauss, & Giroux. Sontag, S. (1989). AIDS and its metaphors. New York: Farrar, Strauss, & Giroux. Stoov´e, M. A., Gifford, S. M., & Dore, G. J. (2005). The impact of injecting drug use status on hepatitis C-related referral and treatment. Drug and Alcohol Dependence, 77, 81–86. Strauss, A., & Corbin, J. (1990). Basics of qualitative research. Grounded theory procedures and techniques. Newbury Park, CA: Sage Publications. Strauss, A., & Glaser, B. (1975). Chronic illness and quality of life. St. Louis, MI: Mosby.
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E. Tompkins, C. N. E., Wright, N. M. J., & Jones, L. (2005). Impact of a positive hepatitis C diagnosis on homeless injecting drug users: A qualitative study. British Journal of General Practice, 55, 263– 268. Treloar, C. J., Hopwood, M. N., & Loveday, S. K. (2002). Hepatitis C-related discrimination in healthcare. Report on the third australasian conference on hepatitis C, Melbourne, March 2002. Medical Journal of Australia, 177, 233–234.
405
Vlahov, D., Fuller, C. M., Ompad, D. C., Galea, S., & Des Jarlais, D. C. (2004). Updating the infection risk reduction hierarchy: Preventing transition into injection. Journal of Urban Health, 81, 14–19. Williams, S. J. (2000). Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health & Illness, 22, 40–67. Zule, W. A. (1992). Risk and reciprocity: HIV and the injection drug user. Journal of Psychoactive Drugs, 24, 243–249.
Research paper
Hepatitis C meanings and preventive strategies among street-involved young injection drug users in Montr´eal ´ ´ Nonn a , Nancy Haley b,c,d , Joseph Cox b,c Elise Roy a,b,c,∗ , Eva a
Service de toxicomanie, Facult´e de m´edecine et des sciences de la sant´e, Universit´e de Sherbrooke, Longueuil, Qu´ebec, Canada b Direction de sant´ e publique, Montr´eal, Qu´ebec, Canada c McGill University, Montr´ eal, Qu´ebec, Canada d D´ epartement de p´ediatrie, Facult´e de m´edecine, Universit´e de Montr´eal, Montr´eal, Qu´ebec, Canada Received 28 September 2006; received in revised form 2 February 2007; accepted 12 February 2007
Abstract Objective: To examine what hepatitis C virus (HCV) infection means to street-involved young IDUs (SYIDUs) and how this impacts on their health behaviours, based on social contexts in which they live. Methods: Thirty-nine SYIDUs with HCV infection participated in in-depth interviews. A typology was built founded on SYIDUs’ street life and drug use experiences. The meanings given to hepatitis C and resulting health behaviours were examined through these experiences. Results: In Montr´eal, “total” experience is characterised by an exclusive social relationship with the street milieu and by intensive drug consumption. In this milieu, where most injectors are HCV-infected but asymptomatic, getting infected is considered trivial. Compared to other more immediate threats, HCV infection and its long-term consequences are lesser concerns. Efforts to inject safely are made to avoid HIV. When these SYIDUs learn they are HCV-infected, they do not make important lifestyle changes. However, since they worry about transmitting the infection to others, they notify their injection partners that they are infected. SYIDUs living a “controlled” experience preserve some stability in their lives and control their consumption. They maintain relationships within mainstream society and have beliefs reflecting these links. They view HCV infection as a serious disease and make significant efforts to avoid sharing their injection equipment and thus remain healthy. When they learn they are HCV-infected, they engage in “liver friendly” behaviours but are not ready to stop injecting. The “disengaging” experience is that of youth who start to disengage from drug injection. They leave the drug milieu and develop new relationships within mainstream society. They adopt new values regarding health. HCV infection is viewed as requiring significant changes in strategies aimed at protecting themselves and others. Conclusion: This research sheds light on the fundamentally social nature of hepatitis C. SYIDUs’ HCV experiences, which evolve in parallel with their street life and consumption trajectories, provide numerous occasions where they can be exposed to prevention messages. © 2007 Elsevier B.V. All rights reserved. Keywords: Street youth; Young IDU; Hepatitis C; Preventive strategies; Qualitative research
Introduction Worldwide, drug injection is a major cause of hepatitis C virus infection (HCV). Among IDUs, observed prevalence rates typically range between 60 and 80 percent, and ∗ Corresponding author at: Universit´ e de Sherbrooke, Campus de Longueuil, Programme d’´etudes et de recherche en toxicomanie, Facult´e de m´edecine et des sciences de la sant´e, 1111 Saint-Charles Ouest, Tour Ouest, Bureau 500, Longueuil, Qu´ebec J4K 5G4, Canada. Tel.: +1 450 463 1835x61823; fax: +1 450 463 6578. ´ Roy). E-mail address: [email protected] (E.
0955-3959/$ – see front matter © 2007 Elsevier B.V. All rights reserved. doi:10.1016/j.drugpo.2007.02.005
incidence rates between 10 and 40 per 100 person-years (Ministerial Advisory Committee on AIDS, Sexual Health and Hepatitis C Sub-Committee, 2006; National Institutes of Health, 2002; Roy et al., 2002). This situation is of great concern, especially since preventive strategies developed to counter HIV do not seem to suffice to control the hepatitis C epidemic (Crofts, Aitken, & Kaldor, 1999; Vlahov, Fuller, Ompad, Galea, & Des Jarlais, 2004). Moreover, despite the fact that excluding IDUs from HCV treatment is no longer policy in many countries, IDUs’ access to therapies for the infection remains problematic (Edlin et al., 2005; Fischer,
398
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
Haydon, Rehm, Krajden, & Reimer, 2004; Stoov´e, Gifford, & Dore, 2005). The situation is all the more complicated because many of them are reluctant to consult physicians and worry about suffering discrimination, which they have often experienced as drug users (Aitken, Kerger, & Crofts, 2002; Crofts, Louie, & Loff, 1997; Day, Ross, & Dolan, 2003; Doab, Treloar, & Dore, 2005; Hepworth & Krug, 1999; Hunt & Derricott, 2001; Krug, 1995; Treloar, Hopwood, & Loveday, 2002). It is increasingly evident that services designed for IDUs are poorly adapted to their needs with respect to hepatitis C. In this context, it is imperative to understand what hepatitis C signifies to them and what this represents in terms of risk management, as well as disease management, once they are infected. Some important researchers have shed light on the influence of social contexts on how meanings of hepatitis C are constructed, and the resulting health behaviours among IDUs (Copeland, 2004; Davis & Rhodes, 2004; Grundy & Beeching, 2004; Hepworth & Krug, 1999; Krug, 1995; Rhodes, Davis, & Judd, 2004; Tompkins, Wright, & Jones, 2005). According to this literature, the emphasis that has been put on HIV in prevention policy has contributed to trivialising hepatitis C in the eyes of IDUs. Moreover in their environment, where hepatitis C is extremely common, IDUs perceive the infection as an unavoidable consequence of drug injection (Rhodes et al., 2004). By contrast, according to some studies conducted among infected IDUs, those who associate with non-IDU milieux see hepatitis C as a serious infection that one should avoid transmitting (Grundy & Beeching, 2004; Hepworth & Krug, 1999). This is problematic for many IDUs since when they reveal their seropositive status to others, it amounts to admitting they have injected drugs, which is still stigmatizing in most non-IDU settings (Copeland, 2004; Hepworth & Krug, 1999; Tompkins et al., 2005). Due to their living conditions, street-involved young IDUs are at very high risk of acquiring or transmitting HCV (Garfein et al., 1998; Hahn et al., 2002; Miller et al., 2002). Development of new interventions for this population is a priority. We undertook this study to examine what hepatitis C means to young IDUs and how this impacts on their health behaviours, based on the social contexts in which they live and consume drugs.
Methodology The present research is a qualitative study based on the symbolic interactionism perspective (Becker, 1963; Blumer, 1986). According to this perspective, human beings are creative social actors who, given the sociocultural conditions in which they live, act according to the meanings they assign to other people’s expectations and actions. These meanings are formed during social interactions among individuals from different socially situated groups. This theoretical perspective has greatly influenced some sociologists who have studied the sociocultural dimensions of diseases, particularly
the complex relationship between the meanings of a disease and management of daily life (Bury, 1982; Charmaz, 1990; Corbin & Strauss, 1985; Goffman, 1963; Herzlich & Pierret, 1987; Sontag, 1978, 1989; Strauss & Glaser, 1975; Williams, 2000). From this theoretical perspective, in this study, we focused on the social processes and interactions that lead to adoption of health behaviours in relation to hepatitis C among young street-involved IDUs. Setting and study sample This study was conducted in Montr´eal, Canada, where needle exchange programmes have been implemented since 1989. As we have shown previously, in this setting, streetinvolved young IDUs care about safe injection. Risky practices occur primarily in specific contexts such as intimate relationships, living on the street, and cocaine-binging episodes where making sure that all pieces of injection equipment are sterile is difficult (Roy, Nonn, Haley, & Morissette, 2003). The targeted study sample was street-involved young IDUs (less than 30 years old) who were HCV antibodypositive. With regards to injection drug use, eligible youth had to be currently injecting drugs or be in the process of quitting injection, either by undergoing therapy or through their own means. Youth were considered “street-involved” if they had, in the last year, either regularly used the services of street youth agencies or been without a place to sleep more than once. Participants were selected based on relevant strategic variables: age, sex, and time since youth learned that they were HCV-infected. We also proceeded with theoretical sampling according to the techniques used in grounded theory (Glaser & Strauss, 1967; Strauss & Corbin, 1990). Thus, based on new elements that emerged from the interviews, namely the importance of therapies in the construction of HCV meanings, additional participants were recruited. HIV-infected youth were excluded from the study since we believed that the presence of HIV infection could significantly influence their experiences with hepatitis C. Participants were recruited from an ongoing cohort study on HIV and HCV incidence among street youth and from methadone programmes and medical clinics. The study sample included 39 participants, 23 males and 16 females, 18–27 years old. They had been injecting for 2–10 years, and the length of time they had known they were infected with HCV varied from 2 weeks to 10 years, including 9 participants who had known for a year or less. The interviews In-depth interviews were conducted, covering the period between the time participants started injecting and the moment they learnt they were infected; then the moment they were tested; finally the period during which they have been living with the infection. We asked participants to speak about their experiences regarding the three main themes of the
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
study: drug consumption, street life and hepatitis C. Different topics were addressed systematically: living conditions, social networks, substance use (alcohol and drugs), points of view regarding hepatitis C, strategies to prevent HCV acquisition, experiences of HCV testing, and strategies to maintain health and prevent transmission to others, once infected. The interviews were conducted between February 2004 and June 2005. All interviews were recorded and transcribed. A sum of $25 was given to participants. The protocol was approved by the Institutional Review Board of the Faculty of Medicine at McGill University. Analysis We began the analysis by identifying the “smallest units of meanings” related to the main themes under study for each interview. Subsequently, consistencies and variations in participants’ accounts were brought to light through constant comparative analysis. This analysis enabled us to build a typology founded on young IDUs’ street life and drug use experiences. The meanings of hepatitis C and the resulting health behaviours were then examined through these experiences. “Typologies are useful pragmatic creations. They help us make sense of, think about, and bring order to varied segments of our experience”. By focussing on the most significant elements, they lessen dimensional complexities and “highlight salient similarities and differences of phenomena” (Schneider & Conrad, 1981). Typologies are not systems of classification and do not claim to be exhaustive. Typologies do not aim to distinguish one individual from another according to certain criteria but rather to describe different types of experiences that people can have at a given point in their lives. Therefore it is not impossible that a young IDU who goes through a certain experience may later move toward other types of experiences.
399
are in very precarious social and health conditions, often literally living in the streets. All their activities relate to their drug consumption. I stole to be able to use. A lot of people prostitute themselves, others steal, and others beg. You can sell drugs too. Everyone figures out what to do to be able to use drugs; everyone has their own way of finding money. (JeanFranc¸ois, 22/M/8)1 In this case, young IDUs’ social interactions are restricted to street people who inject or who make consumption possible. They get together to buy drugs less expensively, to avoid overdosing or to elude police when they are committing an illegal act. Young IDUs who live this experience can hardly develop intimate relationships or maintain links with people who are not drug users. People, when I was in the streets, people I hung out with, it was people who were in the streets. . . I never had a friend who was settled. (Francis, 18/M/2) Although these young IDUs are aware of their uncontrolled consumption and the risks they take, consistent safe utilisation of injection equipment is difficult. Periods of intense consumption such as during cocaine binges are times of great vulnerability when risky practices are common. When you’re having cravings, if you have a quarter [gram] in your hands. . . Even if you’re aware of the risks, your body’s obsession makes you do things that your mind wouldn’t do normally. It’s really because of coke that hepatitis is spreading. (C´edric, 20/M/3) Homeless episodes are frequent among youth living the “total” experience; these occurrences lead them to inject in the street where the conditions necessary for safe injection are lacking.
Results We identified three different types of experiences. The first is characterised by an intense relationship with the streets and drug use; the second involves limited or controlled contact with the streets and drug use; the third type is characterised by a process of disengaging from the street and drug consumption, and of drawing closer to mainstream society.
I live in an apartment, I have four walls, I have all my stuff, I’m clean. But when you’re in the streets all you have is a backpack, and what you have, you share ‘cause that’s all ´ you have. You know? (Etienne, 25/M/4) Faced with the difficulty of injecting safely, young IDUs come to consider that it is very difficult, or even impossible, to avoid hepatitis C. The fact that many of their injection partners are infected actually adds support to this perception.
“Total” experience The first type of experience is characterised by an exclusive social relationship with the street milieu and by intensive drug consumption. It corresponds to what Castel (1998) calls a “total” experience since it controls all the most significant areas of an individual’s life, and taints all of his or her social relations. When young IDUs go through this experience, they
It’s almost normal to have hepatitis C for us. It’s almost sure that if you’re gonna inject, you’ll get it one day. (Nadia, 25/F/3) 1 The first number after a participant’s name represents his or her age, the second his or her sex, and the third the number of years during which youth injected drugs. All names are fictitious.
400
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
Fatalism leads some young IDUs to trivialise the consequences of their risk-taking behaviours because they believe these are unavoidable.
She told me: “Everything looks fine, except it’s written positive next to hepatitis C.” So I said to her, “Can I see? I hope I don’t have AIDS.” (Yannick, 22/M/5)
I had trivialised it [hepatitis C], and maybe it was like that that I came up with reasons to share with people. . . at least it’s not AIDS, you won’t die of hepatitis C. (Peter, 25/M/9)
Delighted to hear they are HIV-negative, these young IDUs pay little attention to what the nurse or physician tells them. They go back to their milieu where their friends reassure them and “confirm” that hepatitis C is not serious at all. This new status, being an IDU with hepatitis C, can even have a positive significance since it now enables the youth to feel just like everyone else in his milieu.
The comparison of hepatitis C to other problems linked to drug consumption and living conditions plays an important role in the meaning these youth assign to the infection. One of these problems is HIV which “terrorises” many of them despite the fact that it is not that common in their milieu. In young IDUs’ eyes, getting HIV infection is much worse than getting HCV. With hepatitis, if you take care of yourself, you can beat it. With AIDS, if you catch the flu, you’ll get pneumonia and you’ll die. It’s much more serious. (St´ephanie, 22/F/5) Young IDUs also compare the severity of hepatitis C with other problems they experience regularly such as drug overdose. In this context, they are not overly concerned with health problems that may not develop for many years such as those linked to hepatitis C. When you take drugs all the time, you don’t really think you’ll live long enough to die of hepatitis C, it’s something that lasts a long time. (. . .) I’ve had 7 overdoses, and I told myself that I would die of that much sooner than I would die of hepatitis C. (Sabrina, 24/F/6) When young IDUs live the “total” experience, in their eyes, there is no future and therefore hepatitis C treatment is not an option they consider. Besides, most of them believe they are not eligible for treatment or that it would be too difficult for them. Consequently, they see no reason to undergo testing to determine their serological status. Everybody I know who tried the treatment told me that it could make you feel depressed, sick, headachy, dizzy, and stuff like that. I thought if it makes you feel depressed, well, I just came out of a phase where I wanted to kill myself, (. . .) so I’d rather not try the treatment, so if I don’t want the treatment, I don’t see why I should go get checked. (St´ephanie, 22/F/5) Despite their expressed lack of interest, these young IDUs have already been tested, either when participating in studies or when visiting services where HCV tests are done routinely, usually in combination with HIV testing. In our study, since having HIV infection was an exclusion criteria, all participants were HIV-negative. The young IDUs conveyed how relieved they felt, when they were given their test results, to learn they “only” had hepatitis C.
It’s almost like another stage to go through. Once you have hepatitis C . . .you’ll be like . . .you’ll be one of the gang, like. (Pat, 22/M/2) After the test, most of these young IDUs do nothing special for their health and continue using drugs and alcohol. Despite the fact that they are infected, it is nonetheless difficult for them to change their injection practices, and they often use other IDUs’ equipment to inject. However, many of them make an effort to avoid infecting others. When they inject, it is difficult for them to refuse to lend their equipment to people who are experiencing withdrawal and ask to borrow it. They then choose to notify these partners that they are infected, giving borrowers the responsibility to decide whether or not to use the injection equipment. I’m careful. When I cut myself, I’m really careful! I’m a little paranoid about that, like, when I cut myself, I’m really careful about what I touch, I go wash my hands, put on a band aid, it’s a matter of principle. (C´edric, 20/M/3) (. . .) he was using my old [syringe] he knew the risks. I didn’t take the responsibility. He knows what he’s getting into. (. . .) (C´edric, 20/M/3) “Controlled” experience Although they inject drugs and sometimes end up in the streets, some young IDUs nevertheless preserve certain stability in their lives and control their consumption. Those who live this experience succeed in limiting the number of days they consume or the quantity they use in a day. It’s like, I use 3 days, then I stop. I start over but, y’know, I’m not someone whose gonna spend a week on dope, like. (No´emi, 24/F/8) These youth maintain connections with mainstream society, have hobbies, are in music bands, make jewellery or engage in other creative activities, and are not ready to lose these positive assets because of intensive substance use. Most of the time, they live in an apartment, either with their parents or with friends, and have a job or attend school. In these milieux, hepatitis C is seen as a serious disease that people
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
are afraid to contract; young IDUs thus consider hepatitis C prevention and health as important issues. My step-father said: “I’d like to bring you to the hospital for blood tests, for a check-up. We live with you and we’d like to know.” (. . .) my mother was going crazy. (Bruno, 24/M/9) These youth make significant efforts to avoid sharing their injection equipment and so remain healthy. Having access to an apartment, they are generally able to control the sterility of their equipment. I’ve never used someone else’s water, syringe or spoon. It’s a new needle each time, I always do it at home; it’s rare that I shoot up outside. (Max, 24/M/4) Considering that they pay particular attention to the safety of their injections, most of these youth think they know the moment in which they contracted the virus. They take steps themselves to get tested. Undergoing tests “is normal when you inject” and this is true even if “you do everything possible” to avoid infection. I got it [the test] to be sure that I didn’t have anything. I think it’s normal to get tested often when you don’t live a normal life (laughs) when you shoot up. (Nathalie, 20/F/2) These young IDUs assert it is difficult for them to consistently inject safely. Thus they are concerned with the possibility of being infected with HCV and infecting others without knowing it. A number of them get tested to protect their partners, should they be infected. You can spread it too [if you have it] you have to be careful too, so that you don’t give it to other people. . . (Benoˆıt, 24/M/2) At the moment when they find out they are infected with HCV, youth living the “controlled” experience generally pay attention to the information they are given by healthcare providers. Some of them try to find out more about the consequences of hepatitis C and the treatments available. I thought I was going to be sick. I started reading a bit about it. I started to understand, I started getting little pamphlets. (No´emi, 24/F/8) While interactions with mainstream society may help raise young IDUs’ awareness of the risks and significance of hepatitis C, it also poses some dilemmas. In IDU networks, having HCV is considered trivial and sometimes is even seen as proof one belongs to the group. This is not the case in “straight” settings, where having hepatitis C is both a serious problem and often means someone is a “junkie”. Telling parents that one is infected then becomes a challenge.
401
There’s a cure, but it’s not 100% sure, and it’s hard to tell your friends and your family. Telling your mother “I have hepatitis” is hard. You almost have to tell her that you inject drugs at the same time. (Benoˆıt, 24/M/2) Contacts with health service providers are not simple either. Some youth have reported that health professionals were judgmental. But doctors, sometimes the doctors you see at a normal hospital, and you say you have hepatitis C, they look at you with suspicion, it’s associated. . . hepatitis C, it’s rare that someone has it and didn’t get it because of injecting. (Ariane, 23/F/5) In addition to medical visits, these young IDUs make efforts to make significant changes in their lives once they have been infected. Although they are not ready to stop injecting, nonetheless they try to take up good lifestyle habits. I eat a lot more vegetables than before. I’ve always liked meat but vegetables, it’s . . .since I have hepatitis C. (John, 22/M/2) Avoiding spreading the virus is also very important for these youth. They make sure they are the only ones using their personal objects (razors, toothbrush). Some even break their needles once they have injected to resist requests from their injection partners. (. . .) I wouldn’t want anyone or one of my friends to catch it because of me, either accidentally, or because of lack of attention. (Benoˆıt, 24/M/2) “Disengaging” experience For most youth, street involvement and injection drug use are temporary experiences. Whether their experience has been “total” or “controlled”, after a few years, a number of them start disengaging from the streets and consumption. They undertake therapies to stop using drugs, apply for social assistance, get an apartment, look for work or make arrangements to return to school. These youth build longterm life projects, and think about starting a family and having children. Some embark on projects that enable them to transform a negative experience into a positive one (Castel, 1998; Goffman, 1963). I’ve moved on to something else. I want children. . . I would like to do documentaries. (. . .) I’d like to go and teach French all around the world. Really, there’s lot of things I feel like doing. (Maude, 23/F/6) In many cases, the disengagement process starts with, or is at least reinforced by, health problems that, rightly or wrongly, young IDUs attribute to hepatitis C. These problems
402
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
can contribute to their lack of pleasure in being in the streets and using drugs. I was sick of it (. . .), I was sick, I found out I had hepatitis C, I had to stop using [drugs]. It didn’t make sense anymore. (Maude, 23/F/6) Like youth who go through a “controlled” experience, those who “disengage” resume or develop relationships with people who do not consume and for whom being healthy is an important value. However, since they have more support in their new living conditions and environment, they are better able to apply these new values in their own lives. Based on these youth’s accounts, support programmes for drug users play an important role in the disengaging process. For that matter, it is often as participants in methadone programmes that the young IDUs find out they have HCV and, for the first time, hear about the possibility of receiving HCV treatment. Most of these youth see their physicians regularly to have their liver enzymes monitored and eventually ready themselves for treatment. Dr. D. (. . .), well he’s the best doctor in town, as far as I’m concerned. He specialises in hepatitis, so I went back to see him after. That’s when he told me that he’d do follow-up ´ and that he’d keep track of my enzymes. (Etienne, 25/M/4) For young IDUs living the “disengaging” experience, adopting healthy living habits is often the first step towards a stable life. They discover the benefits of eating well or take natural products to improve their health. However, while they make efforts to improve their health, some of them nonetheless find it difficult to stop drinking alcohol. Although they are aware that this habit can damage the liver, for them alcohol represents a substitute for so-called “hard” drugs. Quitting alcohol, often the last step in the disengagement process, poses a major obstacle to receiving hepatitis C treatment. I stopped everything, but I started drinking. I used to do coke and I was doing way to much. Today I just drink too much. I smoke pot like a chimney and I drink. . . Christ do ´ I drink. . . (Etienne, 25/M/4) I never really wanted to do the treatments because I found out you had to stop drinking for 6 months, and then for a year, and then you had to wait another 6 months before maybe seeing any results. So you have to stop living for two years. . . (Maude, 23/F/6) Similar to young IDUs described earlier (“total” and “controlled”), these youth are careful about how they use their personal objects. They also inform their friends and family about their HCV status and how to prevent transmission. However, they have some difficulty negotiating their HCV status with noninjectors with whom they have intimate relationships. Unlike the other youth, they cannot count on their
street friends for comfort since they have severed all links with this milieu. Consequently, they are more exposed to being judged or even rejected by non-IDUs, which they now wish to join. The older I got, the more I changed environments. Well, there were fewer and fewer people around me who had hepatitis and at one point, there weren’t any and I was the only one to have it. (Maude, 23/F/6)
Discussion and conclusion Our study is one of the few qualitative investigations that look at what hepatitis C virus (HCV) infection means to street-involved young IDUs and how this impacts on their health behaviours. One of our main findings is that the meanings and behaviours linked to hepatitis C among young IDUs vary according to the relationships they have with the streets and with drug consumption. Youth who are going through an intense period of consumption and street involvement are those who are less concerned about hepatitis C. In their eyes, the distant threat of possible liver disease does not carry much weight when compared with the numerous difficulties they face in their daily lives. However, our study highlights that these IDUs are not indifferent to hepatitis C. Like youth whose consumption is controlled or those who try to stop using, they worry about transmitting their infection. It may seem paradoxical that these young IDUs do not appear to be worried about acquiring HCV but then, once infected, they are concerned about transmitting the infection. We believe this is not a paradox given the conditions in which they live. For these youth, not only is avoiding contracting HCV very difficult but it is not a priority compared with other risks such as the risk of a fatal drug overdose. However, once infected with HCV, it is not a problem for them to divulge their status to injection partners and they make a point of doing it. Our finding that youth constantly compare hepatitis C to HIV is similar to the results of Rhodes et al. (2004), Davis and Rhodes (2004), and Davis, Rhodes, and Martin (2004) and confirms that the meaning of HCV has been socially constructed in the shadow of HIV. Moreover, our results show how social interactions influence the construction of meanings of hepatitis C. Depending on an IDUs’ environment and his or her interactions with it, the significance of hepatitis C differs. As a result, we have observed, as have others (Grundy & Beeching, 2004; Hepworth & Krug, 1999), that IDUs who have relationships with people in “mainstream society” do not perceive hepatitis C as a trivial affliction and therefore they try to avoid aggravating the state of their health. Their understanding of hepatitis C is also influenced by the health services that young IDUs frequent when they are more stable. The growing importance for these young IDUs to meet with their physicians regularly and to follow their liver enzymes speaks volumes.
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
However, while a certain level of integration into mainstream society helps youth understand the health significance of hepatitis C and act accordingly, this does not bring only benefits. As some researchers have noted (Copeland, 2004; Tompkins et al., 2005), fear of double stigma—having hepatitis C and, especially, being identified as an IDU—is a heavy burden. Like sociologists who studied the sociocultural aspects of diseases (Bury, 1982; Charmaz, 1990; Corbin & Strauss, 1985; Goffman, 1963; Herzlich & Pierret, 1987; Sontag, 1978, 1989; Strauss & Glaser, 1975; Williams, 2000), we have observed links among living conditions, meanings of the disease and disease management. Among young IDUs in Montr´eal, problems with hepatitis C management are exacerbated by the constraints inflicted both by the streets and by drug use. Consequently, it is very difficult for youth who are going through periods of intense consumption and street-involvement to manage the risks related to hepatitis C. As many studies have demonstrated (Bourgois, 1998a,b; Koester, 1994; Latkin et al., 1994; Ouellet, Jiminez, Johnson, & Wiebel, 1991; Roy et al., 2003; Zule, 1992), people without a fixed address easily find themselves on the streets or in public places when they “have” to inject drugs. Existing physical conditions make safe injection very difficult. Furthermore, disease management, when it arises, is very challenging. It is extremely complicated to take care of one’s health when living in the streets. In cases of more stable experiences, the situation is different. It is easier to assemble conditions that are favourable to safe injecting practices and to staying healthy. Youth who ordinarily have a stable place to sleep can store their injection equipment and inject in safer conditions. Once they have HCV, it is less complicated to successfully maintain safe behaviours and healthier lifestyle, see a physician or start therapy. Despite the difficulties inherent to managing hepatitis C, related either to infection prevention or its treatment among young IDUs who are going through periods of intense consumption and street-involvement, our results suggest there is hope. It seems that to better reach them, we must develop diverse interventions that are adapted to their various needs. Stable living conditions appear to be a significant contributor to preventing and controlling hepatitis C. Therefore, for youth who are going through a period of intense consumption and street-involvement, measures designed to improve their living conditions, notably through better access to housing, could assist their attempts to inject safely and avoid HCV transmission. The fact that the efforts young IDUs make are mostly geared towards averting HIV is not bad news in and of itself. As we showed in an other study (Roy et al., 2003), to succeed, young IDUs go to needle exchanges programs. It is up to community workers and health professionals to use this opportunity to reinforce and support safe behaviours, offer counselling on safer injection and hepatitis C prevention, and if needed, talk about treatment. Moreover, we echo
403
the opinion of Loxley, Bolleter, and Carruthers (2001) that this event should be not only a medical but also a psychosocial intervention. These encounters represent excellent occasions for brief and targeted interventions aimed at supporting young IDUs who wish to change their lifestyles and either consume in a more controlled fashion or stop using entirely, and to offer support to help them achieve stable housing. Young IDUs who have HCV and who adopt a more stable lifestyle are motivated to adopt “liver friendly” behaviours. It is vital to support their efforts by providing appropriate counselling and simple measures that are adapted to their precarious situations. For example, in Qu´ebec, a book of recipes adapted to the tastes and lifestyles of street-involved youth with HCV was recently published (Miron, Sarra-Bournet, & D’Antoni, 2005). Lastly, treatment is an option that should not be jettisoned. Whatever their situation, all IDUs should be informed of the options available to them so they can make informed decisions and get medical treatment if indicated. Again, good living conditions are essential and, in this regard, supporting housing for young IDUs should be part of the intervention strategies. Some limitations of our study merit consideration. The advantage of the qualitative method resides in its capacity to delve deeper into certain dimensions that can influence a phenomenon, but does not allow for in-depth analysis of all possible aspects. In this study, we chose to focus on the social interactions of youth with their immediate environment. Also, the fact that participants’ accounts may have been influenced by a certain social desirability is another limit of our study. However, the interviewer’s supportive and nonjudgmental attitude certainly helped reduce the effect of this bias, which is proper to studies on socially undesirable behaviours. Finally, it should be noted that our data was collected in the urban milieu of Montr´eal. It is possible that the characteristics typifying hepatitis C meanings and preventive strategies among injection drug users may differ in other settings. To conclude, this research has shed light on the fundamentally social nature of hepatitis C among young IDUs. Their HCV experiences, which evolve in parallel with their street life and consumption trajectories, present numerous occasions where they can be exposed to prevention messages. Hepatitis C prevention and health promotion messages need to be individualized and meaningful for the youth, in accordance with their concerns and perspectives.
Acknowledgements We would like to thank, above all, the youth who shared their experiences to help us understand the issue of HCV from their perspective. This research was funded by the Canadian Institutes of Health Research.
404
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E.
References Aitken, C. K., Kerger, M., & Crofts, N. (2002). Peer-delivered hepatitis C testing and counselling: A means of improving the health of injecting drug users. Drug and Alcohol Review, 21, 33–37. Becker, H. S. (1963). Outsiders: Studies in the sociology of deviance. New York: Free Press. Blumer, H. (1986). Symbolic interactionism: Perspective and method. Berkeley: University of California Press. Bourgois, P. (1998a). The moral economies of homeless heroin addicts: Confronting ethnography, HIV risk, and everyday violence in San Francisco shooting encampments. Substance Use and Misuse, 33, 2323–2351. Bourgois, P. (1998b). Just another night in a shooting gallery. Theory, Culture & Society, 15, 37–66. Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4, 167–182. ´ Castel, R. (1998). Les sorties de la toxicomanie. Fribourg, Suisse: Editions Universitaires. Charmaz, K. (1990). Discovering’ chronic illness: Using grounded theory. Social Science and Medicine, 30, 1161–1172. Copeland, L. (2004). The drug user’s identity and how it relates to being hepatitis C antibody positive: A qualitative study. Drugs: Education, Prevention and Policy, 11, 129–147. Corbin, J., & Strauss, A. (1985). Managing chronic illness at home: Three lines of work. Qualitative Sociology, 8, 224–247. Crofts, N., Louie, R., & Loff, B. (1997). The next plague: Stigmatization and discrimination related to hepatitis C virus infection in Australia. Health and Human Rights, 2, 86–97. Crofts, N., Aitken, C. K., & Kaldor, J. M. (1999). The force of numbers: Why hepatitis C is spreading among Australian injecting drug users while HIV is not. Viewpoint. Medical Journal of Australia, 170, 220– 221. Davis, M., & Rhodes, T. (2004). Beyond prevention? Injecting drug user narratives about hepatitis C. International Journal of Drug Policy, 15, 123–131. Davis, M., Rhodes, T., & Martin, A. (2004). Preventing hepatitis C: ‘Common sense’, ‘the bug’ and other perspectives from the risk narratives of people who inject drugs. Social Science and Medicine, 59, 1807– 1818. Day, C., Ross, J., & Dolan, K. (2003). Hepatitis C-related discrimination among heroin users in Sydney: Drug user or hepatitis C discrimination? Drug and Alcohol Review, 22, 317–321. Doab, A., Treloar, C., & Dore, G. J. (2005). Knowledge and attitudes about treatment for hepatitis C virus infection and barriers to treatment among current injection drug users in Australia. Clinical Infectious Diseases, 40, S313–S320. Edlin, B. R., Kresina, T. F., Raymond, D. B., Carden, M. R., Gourevitch, M. N., Rich, J. D., et al. (2005). Overcoming barriers to prevention, care, and treatment of hepatitis C in illicit drug users. Clinical Infectious Diseases, 40, S276–S285. Fischer, B., Haydon, E., Rehm, J., Krajden, M., & Reimer, J. (2004). Injection drug use and the hepatitis C virus: Considerations for a targeted treatment approach—The Case Study of Canada. Journal of Urban Health, 81, 428–447. Garfein, R. S., Doherty, M. C., Monterroso, E. R., Thomas, D. L., Nelson, K. E., & Vlahov, D. (1998). Prevalence and incidence of hepatitis C virus infection among young adult injection drug users. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology, 18, S11–S19. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine Publication. Goffman, E. (1963). Stigma: Notes on the management of a spoiled identity. Englewood Cliff, NJ: Prentice Hall. Grundy, G., & Beeching, N. (2004). Understanding social stigma in women with hepatitis C. Nursing Standard, 19, 35–39. Hahn, J. A., Page-Shafer, K., Lum, P. J., Bourgois, P., Stein, E., Evans, J. L., et al. (2002). Hepatitis C virus seroconversion among young injection
drug users: Relationships and risks. Journal of Infectious Diseases, 1186, 1558–1564. Hepworth, J., & Krug, G. J. (1999). Hepatitis C. A socio-cultural perspective on the effects of a new virus on a community’s health. Journal of Health Psychology, 4, 237–246. Herzlich, C., & Pierret, J. (1987). In E. Foster (Ed.), Illness and self in society. Baltimore, Maryland: Johns Hopkins University Press. Hunt, N., & Derricott, J. (2001). Smackheads, crackheads and other junkies; dimensions of the stigma of drug use. In T. Mason, C. Watkins, & E. Whitehead (Eds.), Stigma and social exclusion in health care (pp. 190–205). London: Routledge. Koester, S. K. (1994). Copping, running, and paraphernalia laws: Contextual variables and needle risk behavior among injection drug users in Denver. Human Organization, 53, 287–295. Krug, G. J. (1995). Hepatitis C. Discursive domains and epistemic chasms. Journal of Contemporary Ethnography, 24, 299–322. Latkin, C., Mandell, W., Vlahov, D., Oziemkowska, M., Knowlton, A., & Celentano, D. (1994). My place, your place, and no place: Behavior settings as a risk factor for HIV-related injection practices of drug users in Baltimore, Maryland. American Journal of Community Psychology, 22, 415–430. Loxley, W., Bolleter, A., & Carruthers, S. J. (2001). Talking about testing: Opportunities for prevention in blood borne virus testing and vaccination with injectors. Perth, Western Australia: National Drug Research Institute, Curtin University of Technology. Miller, C. L., Johnston, C., Spittal, P. M., Li, K., Laliberte, N., Montaner, J. S., et al. (2002). Opportunities for prevention: Hepatitis C prevalence and incidence in a cohort of young injection drug users. Hepatology, 36, 737–742. Ministerial Advisory Committee on AIDS, Sexual Health and Hepatitis C Sub-Committee (2006). Hepatitis C virus projections working group: Estimates and projections of the hepatitis C virus epidemic in Australia 2006. Retrieved August 4, 2006, from http://www.carers.health.gov.au/ internet/wcms/publishing.nsf/Content/A6B2E9BE0AE3A249CA25720 20003E1D2/$File/hcvpwg.pdf. Miron, C., Sarra-Bournet, P., & D’Antoni, T. (2005). Raw vegetable flesh! Montr´eal. Qu´ebec: Public Health Agency of Canada. National Institutes of Health (NIH). (2002). Consensus development conference statement: Management of hepatitis C, June 10–12, 2002. Hepatology, 36, S3–S20. Ouellet, L. J., Jiminez, A. D., Johnson, W. A., & Wiebel, W. W. (1991). Shooting galleries and HIV disease: Variations in places for injecting illicit drugs. Crime and Delinquency, 37, 64–85. Rhodes, T., Davis, M., & Judd, A. (2004). Hepatitis C and its risk management among drug injectors in London: Renewing harm reduction in the context of uncertainty. Addiction, 99, 621–633. Roy, K., Hay, G., Andragetti, R., Taylor, A., Goldberg, D., & Wiessing, L. (2002). Monitoring hepatitis C virus infection among injecting drug users in the European Union: A review of the literature. Epidemiology and Infection, 129, 577–585. ´ Nonn, E., ´ Haley, N., & Morissette, C. (2003). Le “partage” des Roy, E., mat´eriels d’injection chez les jeunes usagers de drogues injectables de Montr´eal. Drogues, Sant´e et Soci´et´e, 2(1), 35–55. Schneider, J., & Conrad, P. (1981). Medical and sociological typologies: The case of epilepsy. Social Science & Medicine, 15A, 211– 219. Sontag, S. (1978). Illness as metaphor. New York: Farrar, Strauss, & Giroux. Sontag, S. (1989). AIDS and its metaphors. New York: Farrar, Strauss, & Giroux. Stoov´e, M. A., Gifford, S. M., & Dore, G. J. (2005). The impact of injecting drug use status on hepatitis C-related referral and treatment. Drug and Alcohol Dependence, 77, 81–86. Strauss, A., & Corbin, J. (1990). Basics of qualitative research. Grounded theory procedures and techniques. Newbury Park, CA: Sage Publications. Strauss, A., & Glaser, B. (1975). Chronic illness and quality of life. St. Louis, MI: Mosby.
´ Roy et al. / International Journal of Drug Policy 18 (2007) 397–405 E. Tompkins, C. N. E., Wright, N. M. J., & Jones, L. (2005). Impact of a positive hepatitis C diagnosis on homeless injecting drug users: A qualitative study. British Journal of General Practice, 55, 263– 268. Treloar, C. J., Hopwood, M. N., & Loveday, S. K. (2002). Hepatitis C-related discrimination in healthcare. Report on the third australasian conference on hepatitis C, Melbourne, March 2002. Medical Journal of Australia, 177, 233–234.
405
Vlahov, D., Fuller, C. M., Ompad, D. C., Galea, S., & Des Jarlais, D. C. (2004). Updating the infection risk reduction hierarchy: Preventing transition into injection. Journal of Urban Health, 81, 14–19. Williams, S. J. (2000). Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health & Illness, 22, 40–67. Zule, W. A. (1992). Risk and reciprocity: HIV and the injection drug user. Journal of Psychoactive Drugs, 24, 243–249.