Troubling complaint: Addressing hepatitis C-related stigma and discrimination through complaint mechanisms.

The need to grapple with hepatitis C-related stigma and discrimination in Australian health-care settings has been recognised in public policy, and work is underway to address it. But how likely are people to raise a complaint when they experience stigma or discrimination? And how effective and accessible are complaints mechanisms? Given complaint procedures are considered important parts of the delivery of safe and ethical health care, these are important questions that have yet to be substantially explored. Drawing on interviews with people with lived experience of hepatitis C (n = 30), this article considers how affected people feel about complaints processes and the act of complaining. Alongside these perspectives, we discuss complaint mechanisms, and the views of stakeholders who work with hepatitis C-affected communities in policy, health, legal and advocacy roles (n = 30) on the institutional and cultural dynamics of complaint. We draw on Sara Ahmed's Complaint! and Fraser et al.'s work on drug-related stigma to analyse these concerns that have yet to be researched, and argue that the (unlikely) prospect of successful complaint is a key part of the network of forces that perpetuate stigma, discrimination and disadvantage among people who have (lived with) hepatitis C. Although people with lived experience are often powerful advocates and acutely aware of the deficiencies in the quality of their treatment, our interviews suggest that the obstacles they face to accessing health care are seen as commonplace, intractable and insurmountable; and, that mechanisms for addressing them-where they exist at all-treat complaints in narrowly individualising terms and expose complainants to dismissal. Following Ahmed, we call for a 'troubling' of complaints-responding to them not as individual problems but rather as collective, structural concerns, necessitating new approaches.

'We've got a present for you': Hepatitis C elimination, compromised healthcare subjects and treatment as a gift.

With the advent of highly effective and tolerable direct-acting antiviral treatments for hepatitis C, widespread optimism for and investment in the project of disease elimination now informs the public health response. In Australia, the Commonwealth government has invested heavily in elimination by universally subsidising treatment, promising access for all. Reflecting concerns that commonly accompany ambitious public health projects, cost for governments supporting access to the treatment and cost for individuals consuming it have emerged as central issues. Drawing on 30 interviews with people who have been cured of hepatitis C with direct-acting antivirals, this article examines how cost shapes experiences of hepatitis C treatment and cure in Australia. Drawing on Lauren Berlant's (2011) influential work on 'cruel optimism', we analyse three interconnected ways that notions of cost shape participants' views of treatment as a beneficent gift from the state: (1) understandings of treatment access as a form of 'luck'; (2) conceptions of the cost of treatment; and (3) criticisms of others who are seen to waste state resources by not taking up treatment or by re-acquiring hepatitis C. We argue that, together, these dynamics constitute people affected by hepatitis C not as citizens worthy of public investment and fundamentally entitled to care, but as second-class citizens less deserving of treatment and of the health care to which they might otherwise be considered entitled. It is within this dynamic that the compromised quality of elimination optimism takes shape, binding people affected by hepatitis C to an inequitable relationship to health care, reproduced through the very things that promise to free them of such inequality - investments in access to treatment and cure.

'I'm not hep C free': afterlives of hepatitis C in the era of cure.

Since the advent of more effective, new-generation treatment for hepatitis C, immense resources have been devoted to delivering cure to as many people with the virus as possible. The scale-up of treatment aims to prevent liver disease, liver cancer and onward transmission of hepatitis C, but social research shows that people also approach treatment with its social promises in mind, including the hope that it might reduce or eradicate stigma from their lives. Such hopes reflect broader ideas about medical cure, which is seen as an end point to illness and its effects, and capable of restoring the self to a (previous) state of health and well-being. But what does cure mean among people for whom treatment does not produce an end to the social effects of a heavily stigmatised disease? While new treatments promise to eliminate hepatitis C, accounts of post-cure life suggest that hepatitis C can linger in various ways. This article draws on interviews with people who have undergone treatment with direct-acting antivirals (n=30) in Australia to explore the meanings they attach to cure and their experiences of post-cure life. We argue that dominant biomedical understandings of cure as an 'ending' and a 'restoration' can foreclose insight into the social and other effects of illness that linger after medical cure, and how individuals grapple with those afterlives. Drawing on recent conceptual re-framings of cure from medical anthropology and disability studies, we suggest that thinking at the limits of 'curative reason' helps to better address the afterlives of chronic illness. In the case of hepatitis C, reconceptualising cure could inform improved and less stigmatising ways of addressing people's post-cure needs. And in the era of hepatitis C elimination, such reconceptualisation is increasingly important as the cohort of people undergoing treatment and cure expands worldwide.

The trouble with normalisation: Transformations to hepatitis C health care and stigma in an era of viral elimination.

Modern health-care systems have customarily approached hepatitis C in ways that resemble the public health approach to HIV/AIDS known as 'HIV exceptionalism'. HIV exceptionalism describes the unusual emphasis on privacy, confidentiality and consent in approaches to HIV and was partly developed to address HIV/AIDS-related stigma. In the case of hepatitis C, exceptionalist approaches have included diagnosis and treatment by specialist physicians and other 'boutique' public health strategies. The recent availability of highly effective, direct-acting antivirals alongside goals to eliminate hepatitis C have heralded dramatic changes to hepatitis C health care, including calls for its 'normalisation'. The corollary to exceptionalism, normalisation aims to bring hepatitis C into routine, mainstream health care. This article draws on interviews with stakeholders (n = 30) who work with hepatitis C-affected communities in policy, community, legal and advocacy settings in Australia, alongside Fraser et al.'s (2017, International Journal of Drug Policy, 44, 192-201) theorisation of stigma, and Rosenbrock et al.'s (1999, The AIDS policy cycle in Western Europe: from exceptionalism to normalisation. WZB Discussion Paper, No. P 99-202) critique of normalisation to consider the perceived effects of hepatitis C normalisation. Stakeholders described normalisation as a stigma-reducing process. However, they also expressed concerns about the ongoing stigma and discrimination that is not ameliorated by normalisation. We suggest that in centring normalisation, changes in health care may exaggerate the power of technological solutions to transform the meanings of hepatitis C.

Prioritising Children and Young People with Disability in Research About Domestic and Family Violence: Methodological, Ethical and Pragmatic Reflections.

Purpose: The perspectives of children and young people with disability who experience domestic and family violence are under-researched, impeding the development of approaches that meet their needs. Knowledge gaps stem from the layered discursive positioning of disability, childhood/youth, or domestic and family violence in addition to the methodological, ethical and pragmatic complexity of research needed to understand their priorities and be attuned to their lived experience. This article explores methodological, ethical and practical challenges to centring their voices in research about domestic and family violence. Method: A conceptual framework of feminist disability theory and intersectionality informed our co-designed research, across three phases: (1) quantitative large-scale data linkage and case file analysis; (2) qualitative research with children and young people, their families and service providers and (3) stakeholder engagement workshops. Results: We reflect on how our research was able to prioritise the contextual agency of children and young people with disability, ways it could not, and other constraints. Conclusion: Children and young people with disability experiencing domestic and family violence hold an expert and unique vantage point on what happens to them. Amplifying their priorities for directing policy and organisational change requires more of researchers in terms of methods, but also more flexibility in how projects are funded to enable creativity and innovation. We call for collective attention to frameworks for supported decision-making and child ethics to progress inclusive research which recognises the importance of participation for children and young people with disability.

The freighted social histories of HIV and hepatitis C: exploring service providers' perspectives on stigma in the current epidemics.

A virus has a social history. In the case of the hepatitis C virus (HCV) and HIV, this history is one involving stigma and discrimination, advocacy and activism, and recent dramatic improvements in treatment. These social histories influence the experience of people who live with the viruses, and those who work with them. One aspect of this is the impact of social changes on the biographical disruption and integration brought about by illness. Healthcare practitioners who see significant improvements in the effectiveness of treatment for a condition over the course of their professional life will incorporate those changes into their own history and their relationship to that condition.This article is based on a study of the experiences of serodiscordance, or mixed infection status, in families living with HIV and two types of viral hepatitis, hepatitis B and hepatitis C. The article explores the perspectives of healthcare workers who work with people affected by these viruses, who were asked about their experiences in working with serodiscordance in families. Interviews revealed that changing social meanings given to bloodborne viruses, and changes to treatment over time, held a significant place in the accounts that service providers gave of their work. In asking them to describe their work with HIV and HCV, we were also asking about work that has been shaped by changing patterns and sources of stigma, and recently reshaped by changes in treatment and outcomes. While typically the experiences of patients and their families are used to investigate the social histories of diagnosis and stigma, the professional perspectives and life stories of the service providers who work with them are also revealing. We heard accounts in which histories as well as current regimes were prominent, illuminated further by insights from the sociology of health on narrative and biographical disruption.

Child Sexual Abuse, Alcohol and Other Drug use and the Criminal Justice System: The Meanings of Trauma in Survivor Narratives for a National Royal Commission.

Adverse childhood experiences, including childhood sexual abuse, have significant immediate and lifelong effects including higher risks of alcohol and other drug use and contact with the criminal justice system. The concept of trauma to describe adverse experiences and later behaviours provides potential to reshape prevention and responses for victims. We draw on survivor accounts to a national enquiry, the Australian Royal Commission into Institutional Responses to Child Sexual Abuse, to examine the ways in which trauma is narrated in adverse childhood experiences, alcohol and other drug use and contact with the criminal justice system, and how trauma is interpreted by others in the context of policy and legal findings. These accounts showed damaging and unjust experiences of childhood, which were compounded by subsequent contact with the criminal justice system. Trauma seems to be important to both the experienced narrated by survivors and the synthesising of these experiences into narratives. National enquiries play important roles in listening to survivors and advocating for reform. There is a risk, however, that they will fail to result in substantive change, and function primarily as a forum for bearing witness to trauma, but not preventing it.

Logics of control and self-management in narratives of people living with HIV, hepatitis C and hepatitis B.

In Australia, the response to HIV, hepatitis C and hepatitis B has largely been through the constructed category of 'blood borne viruses' which treats these viruses as an interconnected set of conditions with respect to their mode of transmission. In this paper, we explore how people understand their viral infection, and compare the logics underpinning these different understandings. In-depth interviews were conducted with 61 participants who were either living with a blood borne virus or were the family members of people living with them. Our analysis reveals that the viral infection was often described as 'just a condition that needs to be managed', albeit in potentially exhausting ways. This understanding hinged upon a biomedical logic in which viral invasion was seen as causing illness and in turn necessitating biomedical intervention. In contrast, some participants with hepatitis B presented their infection as a condition unintelligible through Western biomedical logics, defined instead by symptomology - in terms of 'liver disease', and/or 'liver inflammation'. This focus on symptomology calls into question the soundness of prevention and management responses to hepatitis B based in biomedical logics and reveals the extent to which living with a virus involves multiple, sometimes incompatible, cultural logics. The different logics underpinning HIV, hepatitis C and hepatitis B reveal shortcomings of framing these viruses together as a coherent single construct.

Complicating cure: How Australian criminal law shapes imagined post-hepatitis C futures.

In recent years, highly tolerable and effective drugs have emerged promising a radical new 'post-hepatitis C' world. Optimism about medical cure potentially overlooks discrimination and stigma associated with hepatitis C and injecting drug use. Legal frameworks are especially relevant to hepatitis futures, since the law has the potential to reinforce or alleviate stigma and discrimination. This article explores how hepatitis C figures in Australian criminal law and with what potential effects. Drawing on Bruno Latour's work on legal veridiction, Alison Kafer's work on futurity and disability and case law data collected for a major study on hepatitis C and post-cure lives, we explore how the criminal law handles hepatitis C in the age of cure. We find that law complicates cure, constituting hepatitis C as disabling despite the advent of effective cures. The law steadfastly maintains its own approach to disease, disability and illness, untouched by medical and scientific developments, in ways that might complicate straightforwardly linear imaginaries of cure, transformation and progress of the kind that dominate biomedicine. We explore the implications of these tensions between law and medicine.

Professional perspectives on serodiscordant family service provision in the context of blood-borne viruses.

In recognition of the broader relational aspects of viral infections, family support is considered important when someone is diagnosed with a blood-borne virus (BBV), such as HIV, hepatitis C (HCV) and hepatitis B (HBV). However, families' own support needs are often not a priority in service provision within the BBV sector. In this article, we draw on qualitative interviews with 20 key informants working in various professional capacities in health, social policy, care and advocacy sectors in Australia, and explore their experiences and perspectives on family inclusivity in their services. Overall, key informants acknowledged the diversity of what constitutes family, and consistently viewed family engagement as beneficial to both diagnosed individuals and the wider familial networks affected by a diagnosis. However, prioritising individual care in support services presented barriers to engaging families, which are further complicated by the role of stigma in shaping the social realities of living with a BBV. Increasing understanding in service provision settings that serodiscordance can be a family experience has the potential to widen this analytic lens to consider the support needs of families in their own right.

Between Public and Private: Electronic Health Record-sharing, Health Privacy Principles, and Hepatitis C.

People with (a history of) hepatitis C have concerns about privacy and the confidentiality of their health information. This is often due to the association between hepatitis C and injecting drug use and related stigma. In Australia, recent data breaches at a major private health insurer and legislative reforms to increase access to electronic health records have heightened these concerns. Drawing from interviews with people with lived experience of hepatitis C and stakeholders working in this area, this article explores the experiences and concerns of people with (a history of) hepatitis C in relation to the sharing of their health records. It considers the potential application of health privacy principles in the context of hepatitis C and argues for the development of guidelines concerning the privacy of health records held by health departments and public hospitals. Such principles might also inform reforms to legislation regarding access to health records.

Understanding 'risk' in families living with mixed blood-borne viral infection status: The doing and undoing of 'difference'.

'Risk' has long been at the centre of expert and popular perceptions of transmissible and stigmatised blood-borne viral infections, such as HIV and viral hepatitis. There is a substantial body of research on transmission risk among couples with mixed viral infection status (serodiscordance). But we know very little about how families affected by HIV and viral hepatitis engage with understandings of infectiousness and how these shape family relationships in different ways. Guided by cultural theories of risk that build on Mary Douglas' work, we draw on qualitative interviews to explore the 'performativity' of risk in serodiscordant families in Australia. We show how the 'doing' of risk could be constitutive of difference, which unsettled the family connection or deepened existing fault lines. Conversely, the 'undoing' of risk enabled the preservation of the family bond by rejecting difference and reframing risk as an external threat to the family in the form of stigma. We conclude that risk in the context of serodiscordant families had relational implications far beyond viral transmission and consider what our findings might mean for service provision and health promotion campaigns related to blood-borne viruses.

Adapting Service Delivery during COVID-19: Experiences of Domestic Violence Practitioners.

COVID-19 rapidly altered patterns of domestic and family violence, increasing the complexity of women's needs, and presenting new barriers to service use. This article examines service responses in Australia, exploring practitioners' accounts of adapting service delivery models in the early months of the pandemic. Data from a qualitatively enriched online survey of practitioners (n = 100) show the ways services rapidly shifted to engage with clients via remote, technology-mediated modes, as physical distancing requirements triggered rapid expansion in the use of phone, email, video calls and messaging, and many face-to-face interventions temporarily ceased. Many practitioners and service managers found that remote service delivery improved accessibility and efficiency. Others expressed concerns about their capacity to assess risk without face-to-face contact, and were unsure whether new service modalities would meet the needs of all client groups and reflect best practice. Findings attest to practitioners' mixed experiences during this period of rapid service innovation and change, and underline the importance of monitoring emerging approaches to establish which service adaptations are effective for different groups of people, and to determine good practice for combining remote and face-to-face service options in the longer term.

Family imaginaries in the disclosure of a blood-borne virus.

Contemporary sociological work has emphasised that family is not static, but actively shaped by ideas of who and what makes family. Disclosure of an illness, including diagnosis of stigmatised infections such as HIV, hepatitis B virus and hepatitis C virus, can change the dynamics of family relationships. This paper draws on 61 qualitative semi-structured interviews conducted between 2017 and 2019 with people in Australia with one or more of these blood-borne viruses (BBVs) and their family members, to understand the experiences of serodiscordant (mixed viral status) families. Through a thematic analysis, we explore the family imaginaries that participants evoked when describing their disclosure practices in relation to (self-defined) family members, revealing how some participants disclosed in ways that enabled them to shape their family, to maintain boundaries between self and family or to protect family from distress. Participants' accounts of disclosure to family revealed imaginaries of family as a precious web of connections to be nurtured or protected, but also as sites of ambivalent belonging and complex history. We conclude that BBV disclosure practices within families reveal important ideas about families that are imagined in response to the threat of loss, change and stigma.

COVID-19 lockdowns, intimate partner violence and coercive control.

2020 was a year like no other, with the COVID-19 virus upending life as we know it. When governments around the world imposed lockdown measures to curb the spread of COVID-19, advocates in the domestic and family violence (DFV) sector recognised that these measures were likely to result in increases in violence against women, particularly intimate partner violence (IPV). IPV can take many forms, including physical, emotional, psychological, financial, coercive controlling behaviours, surveillance and isolation tactics. Lockdown conditions provide fertile ground for the exercise of coercive control by encouraging people to stay at home, limiting social interactions to household members, reducing mobility and enabling perpetrators to closely monitor their partner's movements. However, media reports and awareness of IPV are generally dominated by a focus on physical violence and lethality, which are easily defined and measured. By contrast, coercive control as a concept is difficult to operationalise, measure and action in law, policy and frontline interventions. This paper discusses the challenges inherent in measuring coercive control and engages with current debates around the criminalisation of coercive control in NSW. Such reflection is timely as the conditions of COVID-19 lockdowns are likely to lead to an increase in coercive controlling behaviours.

Beyond a 'post-cure' world: Sketches for a new futurology of hepatitis C.

Australia's recent investment in, and optimism about, direct-acting antivirals to treat hepatitis C brings with it the promise of new drug futures, including the possibility of a post-hepatitis C world and a revolution in the lives of people affected by the disease. But is the situation more complicated than we might assume? What expectations are being produced about post-cure lives? And what is being overlooked along the way? We argue that hepatitis C policy, practice and research can instantiate a problematic orientation towards medicine and 'the future' and explore ways of moving beyond these orientations. The essay then proceeds into two main stages. First, combining critiques from existing research with preliminary insights from a new study on hepatitis C 'post-cure' lives, we outline some of the key logics regarding cure and post-cure, and explain why such logics are problematic. We argue against the assumption that the availability of a medical cure will alone reverse the entrenched social, political and structural dynamics that drive infections and limit service access. To do so, we note, is to overlook the net of meanings and power relations that co-constitute hepatitis C and injecting drug use and render those associated with them marginalised and disenfranchised. Such optimism erases the legacy of laws and policies devised in a pre-cure world, and their role in generating and limiting new ways of being. Second, we introduce new ideas to the field and articulate a vision for what we call a 'futurology' of hepatitis C, designed to counter these assumptions and take us beyond problematic temporal logics. Our futurology is inspired by the work of Cuevas-Hewitt (2011) on the 'futurology of the present'. Cuevas-Hewitt's approach discards linear temporalities, expectations of revolution and reform, and instead pays attention to multiplicities of becoming in the perpetual present. Taking up ideas from Cuevas-Hewitt, we introduce our own sketches for a 'futurology of hepatitis C'. This is a set of practices for thinking, researching, writing about and otherwise engaging with hepatitis C, characterised by attention not to what an imagined, singular future might look like, or to assumptions about treatment as revolutionary, but to what Cuevas-Hewitt (2011) calls the multiple 'perpetual presents' already with us, and aims to foment hope for change.

The embodied relationality of blood-borne viruses: How families matter in the context of a stigmatised viral infection.

This paper argues that blood-borne viruses are relationally embodied, providing an alternative ontology to the individualising tendencies in medical science, and a more inclusive analysis of serodiscordance (mixed infection status) than the literature's focus on transmission risk in couples. We know little about the wider world of significant relationships in the lives of those with blood-borne viruses. People with HIV and hepatitis C are in a mixed-status relationship not just with intimate partners, but with other family members too. Drawing on qualitative interviews and phenomenological theory, we make the case that families (broadly defined) matter in the context of stigmatised, transmissible infections in ways that extend beyond individual bodies and beyond the usual preoccupation with risk. Despite recent advances in the treatment of blood-borne viruses, our study shows that these infections continue to be experienced and negotiated through embodied connections to significant others, made meaningful through culturally situated understandings and expectations regarding kinship, affinity, love, shared history and obligations. Our findings encourage broader recognition of these viral infections as intercorporeal phenomena, with families intimately entangled in co-creating the meanings and experiences of disease.

"A more accurate understanding of drug use": A critical analysis of wastewater analysis technology for drug policy.

The idea of identifying and monitoring urinary excretion of illicit drugs and their metabolites in wastewater has been seen by governments and international organisations as 'promising'. It is claimed that such approaches will enable governments to effectively direct resources to priority areas, monitor the progress of demand and supply reduction strategies, as well as identify emerging trends. Drawing on poststructural approaches to policy analysis and insights from science and technology studies, we consider how the technology of wastewater analysis may be seen as a kind of proposal with productive capacity and constitutive effects. Through this analysis, we seek to raise ontopolitical questions about the production of data by interrogating the claims to 'accuracy' promoted in wastewater analysis, and illuminating the assumptions underpinning such pursuits. By taking an approach which sees method as performative rather than as descriptive of a pre-existing reality, we consider how wastewater analysis enacts realities into being in the drugs field. Taking Australia's National Wastewater Drug Monitoring Program as a case example, we argue that wastewater analysis constitutes drug use as measurable, countable and comparable and, in doing so, enacts a homogenous drug using population in a bounded geographical space, with implications for drug policy. Furthermore, the claim to 'accuracy' constitutes people who use drugs as lacking in knowledge and unaware, and relates to a range of practices which work to continually re-produce people who use drugs as criminal, untrustworthy and in need of surveillance. Through this analysis, we seek to generate critical discussion about practices of 'evidence-making', the privileging of 'scientific data' in drug policy processes (especially as it relates to population prevalence of drug use), and the hitherto unexamined effects of wastewater analysis for drug policy.

'Good enough' parenting: Negotiating standards and stigma.

BACKGROUND: Policy concern with families has led to the framing of 'good parenting' as a skill set that parents must acquire while 'poor parenting' is linked to a raft of social problems, including child maltreatment. A range of professionals are responsible for monitoring parents for evidence of 'poor parenting', and for reporting those parents to statutory child protection authorities. Little is known about how parents in vulnerable circumstances negotiate these dual pressures of 'good parenting' and surveillance. METHODS: Eight parents who use drugs were interviewed about raising children well. The data is drawn from a project that used a positive deviance approach to understand the practices and norms that contribute to positive child outcomes in communities where positive outcomes are unexpected or statistically anomalous. RESULTS: Parents use a range of strategies to minimise risk of harm from drug use. Participants resist negative stereotypes that portray their parenting primarily in terms of risk; and in contrast to previous research, describe feelings of guilt but not shame. Systemic barriers to safe environments include the nature of illicit drug markets and the surveillance and policing responsibilities of service agencies. CONCLUSION: The findings contribute to an understanding of safe and competent parenting by parents who use drugs and highlight how drug laws and fear of intervention can work against the creation of safe family environments.