The 3D project: Diagnosis, disclosure, discrimination and living with hepatitis C

The report explores exigent conditions associated with living with hepatitis C infection. Intersecting these demands are the effects of stigma and social marginalisation. Many people with hepatitis C have to navigate and negotiate daily a field strewn with misinformation, conflicting identities and unequal power relations, often while labouring under significant ill-health and surviving on low incomes

Alcohol and other drug continuing care for young people:identifying helpful program mechanisms

‘Continuing care’ refers to the provision of co-ordinated care and support overtime. Currently, little is known about continuing care programs for young people who complete alcohol and other drug treatment. This paper analyses data from an interview-based study that aimed to identify the generative mechanisms underpinning an innovative continuing care program for young people. Researchers recruited 11 current and former program clients aged 17 to 25 years and nine program staff. Analysis identified five generative mechanisms of the program that supported participants to manage their substance use over the long term, namely person-centred counselling; relationship stability; safety and inclusion; situated mode of ordering continuing care; and organizational memory. Participants reported that the best continuing care for young people is holistic, includes regular and sustained contact, employs an innovative approach to intervention, establishes links with community services and other support structures, and provides care within a safe, person-centred, and situated framework

Beyond cure:patient reported outcomes of hepatitis C treatment among people who inject drugs in Australia

Abstract Background Recent advances in the treatment of hepatitis C virus (HCV) infection provide the possibility of eliminating HCV as a public health threat. This focus on HCV elimination through treatment, however, is also driving a concomitant focus on ‘achieving cure’ as the primary outcome of treatment. The aim of this paper is to explore what people who inject drugs consider to be important in relation to outcomes of HCV treatment, and whether there are outcomes ‘beyond cure’ that might be important to understand as part of improving engagement in treatment. Methods A peer researcher with experience of both HCV treatment and injecting drug use conducted interviews with 24 people in the following groups in Melbourne, Australia: (1) people who had refused or deferred HCV treatment; (2) people who were actively thinking about, planning and/or about to commence HCV treatment; (3) people currently undertaking HCV treatment and (4) people who had recently completed HCV treatment. Results The findings show that people who inject drugs are seeking outcomes ‘beyond cure’ including improved physical and mental health, positive changes in identity and social relationships and managing future health and risk. Participants indicated that these other outcomes had not been addressed within their experience of HCV treatment. Conclusion While cure is an obvious outcome of HCV treatment, patients are seeking change in other areas of their lives. This study also provides valuable insights for the development of patient-reported measures in this context, which would be an important step towards more patient-centred approaches to HCV treatment

Receiving a hepatitis C-positive diagnosis

Abstract Background: There is a paucity of academic literature that describes patients` experiences of receiving a hepatitis C-positive diagnosis, doctors` explanations of the infection and referral to support services. Aim: The aim of the present study was to report findings on receiving a positive diagnosis from a study of people with hepatitis C infection. Method: A cross-sectional study of people with hepatitis C infection living in New South Wales, Australia, was carried out (n = 504). Results: Of participants diagnosed with hepatitis C infection from 1989 to 2001 (n = 417), just under one-third (29.5%, n = 123) reported that they had received `no explanation` about their infection from their doctor at diagnosis. Women and those diagnosed from 1989 to 1996 were significantly more likely to report receiving no explanation than men and those diagnosed later (35.4 vs 23.7% and 37.5 vs 23.0%, respectively). Similarly, current injecting drug users and those diagnosed from 1989 to 1996 were significantly more likely to report receiving no post-test counselling than those who were not currently injecting and those diagnosed later (42.9 vs 30.2% and 37.6 vs 25.9%, respectively). Participants diagnosed from 1997 to 2001 were significantly more likely to report receiving pamphlets about hepatitis C infection (39.2 vs 23.7%), information about treatments (24.5 vs 16.2%) and advice regarding natural therapies (9.1 vs 3.8%) than those diagnosed earlier. Conclusions: These data provide evidence of an increase in the dissemination of hepatitis C information by doctors at diagnosis during the late 1990s. Continued effort is needed to improve doctors` provision of information and referral to specialists and support agencies for people newly diagnosed with hepatitis C. (Intern Med J 2004; 34: 526-531). [Journal Article; In English; Australia

Birds of a feather: prohibition and hepatitis C related discrimination

In Australia, more than 90 percent of new hepatitis C infections occur among people who inject drugs. Continued discrimination and stigmatisation of drug users will obstruct efforts to prevent the further spread of the virus among the community, argue Max Hopwood and Carla Treloar

Disclosing hepatitis C infection within everyday contexts implications for accessing support and healthcare

In this paper the authors quantify hepatitis C disclosure outcomes across social contexts and identify the factors associated with widespread disclosure of infection. In a cross-sectional survey of people with hepatitis C (N = 504) more than half reported receiving a bad reaction from someone following disclosure. Unauthorized disclosure occurred, and many participants had been pressured into disclosing their infection. The factors associated with widespread disclosure were: education level; knowing other people with hepatitis C; feeling fatigued; receiving disclosure advice; and experiencing unauthorized disclosure. Bad reactions following disclosure are common and may impede health-seeking behaviour including uptake of hepatitis C treatment

Beyond interferon side effects:What residual barriers exist to DAA hepatitis C treatment for people who inject drugs?

Recent advances in the efficacy and tolerability of hepatitis C treatments and the introduction of a universal access scheme for the new Direct Acting Antiviral (DAA) therapies in March 2016, has resulted in a rapid increase in the uptake of hepatitis C treatment in Australia. Despite these positive developments, recent data suggest a plateauing of treatment numbers, indicating that more work may need to be done to identify and address ongoing barriers to hepatitis C treatment access and uptake. This paper aims to contribute to our understanding of the ongoing barriers to DAA therapies, with a focus on people who inject drugs. The paper draws on participant interview data from a qualitative research study based on a participatory research design that included a peer researcher with direct experience of both hepatitis C DAA treatment and injecting drug use at all stages of the research process. The study’s findings show that residual barriers to DAA treatment exist at personal, provider and system levels and include poor venous access, DAA treatments not considered ‘core-business’ by opioid substitution treatment (OST) providers, and patients having to manage multiple health and social priorities that interfere with keeping medical appointments such as childcare and poor access to transport services. Further, efforts to increase access to and uptake of DAA hepatitis C treatment over time will require a focus on reducing stigma and discrimination towards people who inject drugs as this remains as a major barrier to care for many people