Hepatitus C and Illicit and Injecting Drug Use
The National Centre in HIV Social Research’s hepatitis C research program started in 1999 and has grown substantially since then to focus on a wide range of work related to hepatitis and illicit drug use. Our program focuses on issues of hepatitis C prevention, vaccines, and experiences of and decisions about treatment, support and care. Beyond that, we are also interested in the use of illicit and injecting drugs, as drug injecting is the primary route of transmission of hepatitis C in Australia. Our work in this area includes behavioural surveillance research of people who inject drugs and young people who use illicit drugs. We also have interests in research on the experience and delivery of drug treatment.
Much of our work is supported by strong partnerships with Hepatitis Australia, the Australian Injecting and Illicit Drug Users League, and their respective state and territory member organisations. What often differentiates our work on hepatitis C and drug use from that conducted by other research organisations is our focus on consumer experiences and the social contexts of drug use, hepatitis C infection and treatment. This has allowed us to work with our community and government partners to suggest innovative approaches to education, prevention and service delivery e.g. blood awareness for hepatitis C prevention, mindfulness of injecting practice and consumer participation in drug treatment.
Current projects
- Staying safe: How do long term drug users avoid hepatitis C infection?
- Injecting practice among heterosexual hepatitis C sero-discordant couples
- Periodic survey of drug use among young people
- National treatment service users project: Phase 2
- Making decisions about hepatitis C treatment
- A study of post-interferon-based hepatitis C treatment experience
- Hepatitis C prevention – the real deal: automatic influences on injecting behaviour, Phase 2
- Hepatitis C seroconversion: using qualitative research to enhance surveillance
- Pharmacy Fitpack survey
- UNSW hepatitis C vaccine initiative
Selected past projects
- Hepatitis C treatment experiences (PDF) (2 Mb)
- Comparing the role of takeaways in methadone maintenance treatment in New South Wales and Victoria
- Barriers and incentives to drug treatment: mental health and drug use co-morbidity
- An analysis of 'blood awareness' for the purposes of hepatitis C prevention, education and health promotion
- The 3D project: diagnosis, disclosure, discrimination and living with Hepatitis C
- Initiation and transition to injecting drug use among young people
Contacts
For more information please contact Associate Professor Carla Treloar, Head, Hepatitis C Program.
Project descriptions
Staying safe: How do long term drug users avoid hepatitis C infection?
Treloar and Harris
This project aims to use a life history approach to understand the factors which differentiate those long-term injectors who have not acquired with those who have acquired hepatitis C to inform prevention strategies. Although the prevalence of hepatitis C among those who have injected for 8-15 years is high (about 2/3 of people will have acquired hepatitis C), there are people who remain hepatitis C negative. This qualitative, life-history project will recruit participants in Sydney and interview them a number of times to cover a wide range of issues in their lives. This project is part of an international collaboration with similar projects being undertaken in New York and London.
Injecting practice among heterosexual hepatitis C sero-discordant couples
Treloar, Brener, Bryant and Gray
Although surveillance data shows that rates of drug injecting equipment sghharing are high among sexual partners, there is very little work in Australia or internationally which addresses the sexual relationship as a site of hepatitis C transmission (or prevention) – emphasizing the underutilization of the social relationship as a unit of analysis of risk behaviour. This study will interview NSP clients with experience of heterosexual serodiscordant (for hepatitis C) relationships. This project, funded by South East Sydney and Illawara Health Service is a pilot study with a full proposal under review with NHMRC.
Periodic surveys of drug use among young people
Monitoring of drug use among young people is largely limited to secondary school surveys from which older youths are excluded, or large population surveys that tend to underrepresent people who live in unstable situations, such as young people. This project complements those other surveys by collecting data on the drug use of young people who attend music festivals, young people who are beyond school age and in a changeable time of life. Annual surveys of young people recruited from the Big Day Out music festival provide data on their recent licit and illicit use of drugs, their attitudes to drug use, their knowledge of how hepatitis C is transmitted, and their experience of and exposure to injecting drug use. The first round of data collection was carried out in January 2004 in Sydney; the most recent, in January 2009 in Sydney and the Gold Coast. Planning is underway to extend the data collection to Perth in 2010.
National treatment service users project, Phase 2
The aim of this study is to implement the specific recommendations of Phase 1 of the Treatment Service Users Project which are to evaluate the suitability and impact of a consumer participation program within various drug treatment settings and to convene a workshop to bring together key stakeholders with the purpose of developing a nationally agreed definition and model of consumer participation to be used at the policy and service delivery level.
Phase 1 of the National Treatment Service Users Project showed that there was a high level of support from service users and providers for implementing a consumer participation program within drug treatment services. Phase 2 will evaluate the feasibility of operating a consumer participation program within drug treatment settings. Five treatment services will be selected to participate in a four- to six-month demonstration project. Qualitative data will be collected from staff and consumers of each service at the beginning and end of the demonstration period to ascertain the perceived suitability and impact of the consumer participation program. Data collection and preliminary data analysis will take place in 2008. This study is a partnership between NCHSR and the Australian Injecting and Illicit Drug Users League.
An investigation into the factors influencing the decision about whether to take up treatment for Hepatitis C
This project used quantitative and qualitative methods to determine the factors that influence people’s decisions to undertake treatment for hepatitis C. In 2008, quantitative data were collected from 713 people with hepatitis C. Respondents were recruited from various avenues including pharmacotherapy clinics, pharmacies, needle and syringe programs, and the mailing lists of the Hepatitis C Council of NSW and Haemophilia Australia. Self-complete surveys collected data about knowledge and perceptions of treatment, social support, symptom severity, and experiences of discrimination, among others. The qualitative component of the project included interviews with people living with hepatitis C and focus groups and interviews with clinicians in drug treatment services. The NCHSR researchers are now working in collaboration with the ETHOS project (Enhancing Treatment for Hepatitis C in Opiate Substitution) conducted by the National Centre in HIV Epidemiology and Clinical Research. A study report about the quantitative and qualitative data will be published in 2010.
Post-treatment outcomes study: exploration of psychosocial impacts following completion of interferon-based treatment for hepatitis C virus infection
The aim of this project is to explore and describe the period following completion of interferon-based treatment for hepatitis C infection with a focus on documenting persistent treatment-related psychiatric and physical after effects.
Recently, significantly increased numbers of people have sought treatment for hepatitis C infection in Australia in line with public health efforts to increase access to treatment. This therapeutic regimen is associated with significant physical and psychiatric impacts and many people discontinue treatment as a result. Over the past decade anecdotal reports and a small amount of published clinical literature have sited persistent neuro-toxicity resulting in manic depression and other ongoing psychiatric and physical adverse events from interferon-based treatments among people who have both successfully completed treatment and discontinued treatment. This qualitative study will use in-depth, semi-structured interviews to explore and describe the persistent impacts of interferon-based treatments for hepatitis C infection among a diverse sample of 30 people who have completed treatment during the previous year.
The real deal in hepatitis C prevention: automatic influences on injecting behaviour
Phase 1 of this project involved collecting video recordings of clients injecting at the Sydney Medically Supervised Injecting Centre and then conducting interviews with these clients after they had reviewed the video footage of their injecting episode. Phase 2 of the project, funded by NSW Health, began in 2007. A series of focus groups was held with people who inject drugs. In these groups, participants reviewed the video material and findings of Phase 1 with the aim of developing peer education messages to use within their injecting networks. Participants trialled these messages within their networks and then attended subsequent groups to discuss the effectiveness of these messages and modify the interventions. In 2009 the data collected in Phases 1 and 2 will be used to develop a model of peer education for use with people who inject drugs. The development of this model will be conducted in partnership with the NSW Users and AIDS Association (NUAA).
The goal of this project was to develop effective hepatitis C prevention messages as well as to provide data for the development of a peer education model for blood-borne virus prevention among people who inject drugs.
Under construction: the social and cultural politics of hepatitis C in Australia
This project aims to investigate the ways in which hepatitis C is being constituted as a disease medically, socially and culturally in Australia to develop insights into how it might be confronted both medically and socially without further stigmatising those affected by it. To this end, the aims of the project include addressing the following questions: What disease concepts are being mobilised to make sense of and act on hepatitis C? What metaphors are circulating in relation to the disease? How does hepatitis C’s symbolic and practical associations with injecting drug use and HIV act to construct the disease both conceptually and materially? How do the wide diversity of symptoms and prognoses related to hepatitis C impact on the way the disease is understood both at a cultural level and among affected individuals?
Hepatitis C seroconversion: using qualitative research to enhance surveillance
This qualitative project will consist of two phases: (i) a mapping exercise will be carried out to identify and assess potential recruitment sites and a pilot study of selected cases (2007-2008); (ii) a targeted study designed to inform the development of anHCV seroconversion surveillance mechanism (2008-2009) will be conducted.
Little is known about events surrounding hepatitis C seroconversion. In-depth qualitative exploration of these events and circumstances will assist with interpretation of surveillance data and the development of hepatitis C prevention programs.
Pharmacy needle and syringe survey: hepatitis C risk and access to sterile injecting equipment in pharmacies
Bryant, Hopwood, Treloar, Brener and Hull
A substantial proportion of sterile needles and syringes distributed in Australia are distributed through pharmacies. However, there is very little information about people who obtain needles and syringes from pharmacies, including whether they are a different group than those who obtain needles from needle and syringe programs. A pilot study was conducted in 2006 through eight pharmacies in south east Sydney. It showed that a considerable proportion of people attending pharmacies do not visit needle and syringe programs, suggesting they are a distinct population of IDU. Moreover, they report a higher incidence of injecting practices that put them at risk for acquiring or transmitting hepatitis C and HIV. In 2007 and 2008 the project was expanded to include most of metropolitan Sydney and the Newcastle and Hunter Valley regions of New South Wales, and in 2009, it expanded to Western Australia.
UNSW hepatitis C vaccine initiative: knowledge of and willingness to participate in vaccine trials
This large project was funded from the UNSW Strategic Research Fund and includes social and epidemiological studies, clinical studies and laboratory-based immunology and virology studies. The component conducted by NCHSR involves a qualitative investigation of the knowledge of hepatitis C vaccine trials among people who inject drugs, and of the factors that would influence their decision to take part in such a trial. Data for this project are sourced from injecting drug users, representatives of services tailored to people who inject drugs, and medical staff involved in their health care. Participants’ knowledge about hepatitis C and its potential impact on the lives of injecting drug users was ascertained, as was their knowledge of and perceptions about vaccine trails. This phase of the project will extend into 2008.
Past project descriptions
Experiences of hepatitis C treatment and its management: What some patients and health professionals say
Hopwood, Treloar, Redsull
This study provided an insight into the impact of treatment-related side effects and the everyday coping strategies deployed by patients during pegylated interferon and ribavirin treatment for hepatitis C infection. Coping strategies included the use of medical interventions like paracetamol, skin care medications and anti-depressants. A large number of personal coping strategies were also identified. Participants receiving treatment for hepatitis C infection reported applying adaptive responses learned during prior adversity to manage severe treatment-related side effects. Participants drew upon previous experiences of alcohol and other drug dependence, growing up in poverty, living with symptoms of chronic illness, coping with childhood sexual abuse, and managing depression to help them cope while in treatment. When these findings are viewed through the theoretical lens of resilience, a construct that has emerged from developmental psychology, there is a need for an approach that assesses individuals’ capacities for coping with adversity in order to ameliorate treatment-related side effects. Strengths-based assessment has been utilized in a variety of counseling-oriented settings over the past two decades and findings from this present study would suggest that pre-treatment evaluation conducted at the liver clinic prior to the commencement of hepatitis C treatment is a novel context where strengths-based assessment may be useful. These findings have implications for the clinical management of hepatitis C treatment; the factors and processes which facilitate adaptive coping to adversity associated with social marginalization can be assessed for their clinical contribution to coping with an arduous regimen.
A NCHSR report and four peer-reviewed articles have been published from these data.
Comparing the role of takeaways in methadone maintenance treatment in New South Wales and Victoria
New South Wales and Victoria have very different policies concerning ‘takeaway’ methadone (methadone consumed at home rather than on clinic or pharmacy premises). This three-year project, funded by the National Health and Medical Research Council, compared these two policy environments by interviewing methadone clients, dosing nurses, dispensing pharmacists, prescribing doctors and drug policy makers. It also investigated the social and cultural meanings given to takeaways by clients and workers, and the circumstances under which diversion of methadone to street sale takes place. The purpose of this study was to better understand the significance of takeaways to clients and workers, and to provide recommendations for future policy.
This highly successful project was completed during 2007. A number of refereed journal articles have been published. The report, Methadone maintenance treatment in New South Wales and Victoria: takeaways, diversion and other key issues (PDF) (599 Kb), was launched at the Australasian Professional Society for Alcohol and Drugs Conference in Auckland in November 2007 and the book from this project: Substance and substitution : methadone subjects in liberal societies by Suzanne Fraser and kylie valentine was published in early 2008.
Barriers and incentives to drug treatment for illicit drug users with mental health comorbidities and complex vulnerabilities
This study used qualitative research methodology to provide contextual, in-depth information about barriers and incentives to treatment by illicit drug users with common mental health problems and complex vulnerabilities. The project was the continuation of a collaborative partnership between NCHSR, the Australian Injecting and Illicit Drug Users League (AIVL) and LMS Consulting. Seventy-seven illicit drug users with histories of depression and/or anxiety participated in interviews at four sites across Australia. In addition, 18 service providers from the drug and alcohol, mental health and community sectors were interviewed. A report for the Australian Government: Barriers and incentives to treatment for illicit drug users with mental health comorbidities and complex vulnerabilities (PDF) (728 Kb), was published in 2007. A number of peer-reviewed articles will be published based on findings from the study.
An analysis of 'blood awareness' for the purposes of hepatitis C prevention, education and health promotion
The promotion of ‘blood awareness’ has been identified as a key strategy for containing the spread of blood-borne viruses. However, the development of a heightened awareness of blood as a source of infection requires consideration of many sensitive social and health implications, such as increased phobias about blood, which can be linked to discrimination around injecting drug use, and racial, ethnic and sexual identity categories. This study aims to identify the different ways in which individuals and communities of individuals relate to their own blood and the blood of others, to determine the extent to which understandings of blood play a role in hepatitis C transmission and thus its prevention, and to produce a typology of the ways in which blood can be characterised for effective health promotion. Seventy-eight interviews were completed and preliminary analysis of some of the data has taken place. Data collection and analysis was completed in 2003. Funds were obtained from NSW Health to conduct a research feedback session in May 2003 with 100 stakeholders from around New South Wales were invited to consider the project’s results and innovations in health promotion and to discuss the NSW Health Promotion Plan for Hepatitis C. Also, the report, Blood awareness in hepatitis C prevention (PDF) (444 Kb), was launched in October 2003 and a number of publications produced in 2004.
The 3D project: diagnosis, disclosure, discrimination and living with Hepatitis C
The aim of the 3D Project was to explore the experiences of diagnosis, disclosure and discrimination among people living with hepatitis C. The study involved quantitative and qualitative research components with Phase 1 consisting of a self-administered short-form questionnaire (n = 504) that focused on three main areas. These were: (i) the impacts of a positive hepatitis C diagnosis on people’s relationships, work and interactions with health care service providers (ii) the impacts and outcomes of disclosing a hepatitis C positive serostatus (iii) and discrimination and its effects on those living with hepatitis C, including ability and desire to access health care. Analysis of these data provided a clear framework for formulating research questions explored during Phase 2. Phase 2 of the 3D project comprised the qualitative component, consisting of in-depth, semi-structured interviews with (n = 19) people with hepatitis C. This was a comparative study of experiences of diagnosis, disclosure and discrimination and the role of social support in relation to these. Data analysis for this project was completed in 2003 and a report, The 3D Project: diagnosis, disclosure, discrimination and living with hepatitis C (PDF) (557 Kb), was launched in October 2003. A number of papers have been published from this study.
Initiation and transition to injecting drug use among young people
The study documents the history of the initiation and transition to injecting of a range of current injectors 25 years and under, and the relationship between the circumstances of the initial injecting episode and current risk practices with respect to transmission of hepatitis C. The study is original in its focus on transition and initiation and the multiple contexts in which these take place, the range of networks to be studied, the varieties of drugs studied, and the exploration of the interpersonal, subcultural and physical contexts in which young people inject drugs. The project is a collaboration between researchers, educators and clinicians, the Ted Noffs Foundation, the National Drug and Alcohol Research Centre UNSW, NSW Users and AIDS Association (NUAA), Australian Injecting and Illicit Drug Users League (AIVL) and Kirketon Road Clinic. The study was expanded with the addition of a Northern Rivers arm in 2001. The report, Risk for hepatitis C: transition and initiation to injecting drug use among youth in a range of injecting drug user networks (PDF) (737 Kb), was launched in 2003 with significant media coverage. Papers arising from the study have been written for publication.
