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.

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.

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.

The 'normality' of living as a gay serodiscordant couple in Sydney, Australia.

Serodiscordant couples are often understood through a discourse of HIV-risk or researched in terms of the psychological stressors they face. However, due to antiretroviral treatments people living with HIV can achieve undetectable viral loads, which not only make them non-infectious to partners, but allow them to think of their lives and relationships as safe and viable. These realisations mean that serodiscordant couples often embrace an HIV 'normalisation' discourse. In this article, we argue that this discourse of HIV 'normalisation' can overlook the more nuanced complexity of issues still faced by couples today, which reveal how their experiences of 'normal' are sometimes challenged and are not necessarily 'normal'. Utilising semi-structured interviews with 21 gay men in serodiscordant relationships in Sydney, Australia, we draw on the concept of 'home' life to explore how men engage with discourses of normalisation to describe and enact their relationships. We argue that although HIV is managed well enough to be insignificant in the context of home life, experiences or anticipation of stigma in public often remind couples that they are yet to be considered 'normal' socially.

Mapping Experiences of Serodiscordance: Using Visual Methodologies to Construct Relationality in Families Living With or Affected by Stigmatized Infectious Disease.

The "my health, our family" research project was established to document stories of what serodiscordance (mixed infection status) means for Australian families affected by HIV, hepatitis B, and/or hepatitis C. A family mapping exercise was developed for the start of interviews as a way to conceptualize serodiscordance as a movement of "closeness" and "distance" within the relational networks that participants defined as "family," the outcome of which was originally intended as a guide to explore the contributions of each family member in the in-depth qualitative interviews that followed. Such static representations of family were soon revealed to be inadequate for capturing the contingent, flexible, and multifaceted nature of familial relationality in the management of these infections. In this article, we explore these shifts for the conceptual openness mapping methods facilitate, and the constraints they reveal, for spatializing family relations in ways that heed diverse experiences of serodiscordance.

Promoting 'Equitable Access' to PrEP in Australia: Taking Account of Stakeholder Perspectives.

As evidence of the safety and effectiveness of HIV pre-exposure prophylaxis (PrEP) has grown, so has attention to the views of prospective users and providers. However, far less attention has been paid to understanding the perspectives of other stakeholders in the rollout of PrEP access programs. We conducted 21 semi-structured qualitative interviews in 2017 with key stakeholders working across the policy, advocacy, research and/or clinical dimensions of the Australian HIV response, before federal support for a subsidised access scheme was achieved. Our analysis explored three areas of shared concern: who is a suitable candidate for PrEP; why are disparities in PrEP access important; and how can disparities be addressed? In examining how this diverse group of professionals grappled with the challenges of promoting 'equitable access' to PrEP in an increasingly resource rationed health system, we can see how the principles believed to underpin the Australian response to HIV were both reaffirmed and challenged through this period of significant change.

"Just take your medicine and everything will be fine": Responsibilisation narratives in accounts of transitioning young people with HIV into adult care services in Australia.

Young people who have grown up with perinatally acquired HIV in wealthy nations are increasingly transitioning into adult care settings which expect more independence and self-regulation than paediatric care. Drawing on the first qualitative study on growing up with HIV in Australia, this paper examines "responsibilisation" narratives in semi-structured interviews conducted with young people with HIV and their paediatric and adult care providers. Three dominant narratives were identified: responsibilisation as imperative, practice and contest. This suggests that while young people growing up with HIV in an advanced liberal setting such as Australia may value the independence of adult care, and appreciate the need to take responsibility for their health, the practices involved in becoming a responsible health citizen are shaped by individual histories and circumstances, and in some cases, can lead to serious contestation and conflict with care providers. Placing a stronger emphasis on what young people can gain from taking an active role in managing their health may more successfully foster responsibilisation, rather than focusing on what they will lose. Clinicians could benefit from greater support regarding how to engage young people with the elements of responsibilisation likely to resonate more meaningfully at different points in their lives.

'The world has changed': pharmaceutical citizenship and the reimagining of serodiscordant sexuality among couples with mixed HIV status in Australia.

In this article, I revisit the question of whether HIV can ever be reimagined and re-embodied as a potentially non-infectious condition, drawing on a current qualitative study of couples with mixed HIV status (serodiscordance) in Australia. Recent clinical trials have consolidated a shift in scientific understandings of HIV infectiousness by showing that antiretroviral treatment effectively prevents the sexual transmission of HIV. Contrary to common critiques, I explore how the increasing biomedicalisation of public health and the allied discourse of 'normalisation' can in fact de-marginalise stigmatised relationships and sexualities. Invoking Ecks's concept of 'pharmaceutical citizenship', I consider whether the emerging global strategy of HIV 'treatment-as-prevention' (TasP) can open up new trajectories that release serodiscordant sexuality from its historical moorings in discourses of risk and stigma, and whether these processes might re-inscribe serodiscordant sexuality as 'normal' and safe, potentially shifting the emphasis in HIV prevention discourses away from sexual practice toward treatment uptake and adherence.

On the Margins of Pharmaceutical Citizenship: Not Taking HIV Medication in the "Treatment Revolution" Era.

With the expanding pharmaceuticalization of public health, anthropologists have begun to examine how biomedicine's promissory discourses of normalization and demarginalization give rise to new practices of and criteria for citizenship. Much of this work focuses on the biomedicine-citizenship nexus in less-developed, resource-poor contexts. But how do we understand this relationship in resource-rich settings where medicines are readily available, often affordable, and a highly commonplace response to illness? In particular, what does it mean to not use pharmaceuticals for a treatable infectious disease in this context? We are interested in these questions in relation to the recent push for early and universal treatment for HIV infection in Australia for the twin purposes of individual and community health. Drawing on Ecks's concept of pharmaceutical citizenship, we examine the implications for citizenship among people with HIV who refuse or delay recommended medication. We find that moral and normative expectations emerging in the new HIV "treatment revolution" have the capacity to both demarginalize and marginalize people with HIV.

"I don't blame that guy that gave it to me": contested discourses of victimisation and culpability in the narratives of heterosexual women infected with HIV.

In Australia, most women with HIV were infected through heterosexual sex, echoing global patterns. In media coverage, these women are typically portrayed as having been deceived by men they trusted, or as victims in criminal cases against HIV-positive men from high-prevalence countries. Heterosexuals are clearly overrepresented in such cases, a pattern consistent across high-income countries. It has been suggested that the victim/perpetrator distinction that defines criminal cases and media stories has some resonance among heterosexuals because of gender power dynamics. But less attention has been paid to the ways women themselves make sense of heterosexual transmission of HIV. Drawing on qualitative interviews from two larger studies, this article shows how the victim-culprit binary is challenged by women's own accounts of acquiring HIV. None presented themselves as "victims" in any straightforward sense, or placed the blame squarely on the men, including men who had not disclosed HIV. Instead, their narratives revealed themes of "mutual vulnerability" and far more ambivalent allocations of responsibility. I conclude that the tendency to position women who become infected with HIV in a victim discourse obscures the complex realities of sexual practice and gender that play a part in the epidemic in any cultural context and that have implications for HIV prevention.

No ordinary mainstream illness: how HIV doctors perceive the virus.

Research has shown that social representations of HIV can constitute barriers to health workers' willingness to provide HIV care. Considering a growing shortage in the HIV primary workforce in Western countries, we examine how HIV is perceived today by doctors involved in its care. In 1989 Sontag predicted that once the virus became better understood and treatable, the dehumanizing meanings that defined the early epidemic would vanish and HIV would turn into an ordinary illness. However, research shows that HIV still carries stigma, including in the health care sector. Drawing on qualitative interviews, we found that HIV doctors in Australia perceived HIV as a far-from-ordinary chronic illness because of its extraordinary history and its capacity to extend in multiple clinical and social directions. These rarely explored perspectives can contribute to the social reframing of HIV and to strategies to build a dedicated HIV workforce in Australia and elsewhere.

Local Pathways of "Serodiscordant Couples": Unpacking a Global HIV Population Category in Papua New Guinea.

HIV prevention programs focus on global "key populations" and more localized "priority populations" to ensure effective targeting of interventions. These HIV population categories have been subject to considerable scholarly scrutiny, particularly key populations, with less attention given to critically unpacking priority populations at local levels, for example "serodiscordant couples" (one partner has HIV, but not the other). We examine this population in the context of Papua New Guinea to consider how local configurations, relational pathways, and lived realities of serodiscordant relationships strain the boundaries of this population category and raise intriguing questions about its intersection with contemporary biomedical agendas.

At the coalface and the cutting edge: general practitioners' accounts of the rewards of engaging with HIV medicine.

BACKGROUND: HIV has become a chronic manageable infection in the developed world, and early and lifelong treatment has the potential to significantly reduce transmission rates in the community. A skilled and motivated HIV medical workforce will be required to achieve these health management and prevention outcomes, but concerns have been noted in a number of settings about the challenges of recruiting a new generation of clinicians to HIV medicine. METHODS: As part of a larger qualitative study of the HIV general practice workforce in Australia, in-depth interviews were conducted with 31 general practitioners accredited to prescribe HIV medications in community settings. A thematic analysis was conducted of the de-identified transcripts, and this paper describes and interprets accounts of the rewards of pursuing and sustaining an engagement with HIV medicine in general practice settings. RESULTS: The rewards of initially becoming involved in providing care to people living with HIV were described as interest and inspiration, community calling and right place, right time. The rewards which then supported and sustained that engagement over time were described as challenge and change, making a difference and enhanced professional identity. Participants viewed the role of primary care doctor with special expertise in HIV as occupying an ideal interface between the 'coalface' and the 'cutting edge', and offering a unique opportunity for general practitioners to feel intimately connected to both community needs and scientific change. CONCLUSIONS: Approaches to recruiting and retaining the HIV medical workforce should build upon the intellectual and social rewards of this work, as well as the sense of professional belonging and connection which is imbued between both doctors and patients and across the global and national networks of HIV clinicians. Insights regarding the rewards of engaging with HIV medicine may also be useful in enhancing the prospect of general practice as a career, and strengthening retention and job satisfaction among the existing general practice workforce.

Non/infectious corporealities: tensions in the biomedical era of 'HIV normalisation'.

In the contemporary HIV epidemic, antiretroviral treatments are increasingly considered so effective at viral suppression that they render people with HIV sexually non-infectious. With its radical implications for global HIV prevention, this emerging paradigm is invested with the potential to turn the epidemic around and to 'normalise' one of the most feared infectious diseases in history, thus echoing wider trends of 'biomedicalisation'. What remains unexamined is whether this paradigm shift will bring about a parallel shift in the embodied experiences of being HIV-positive. This article explores the nascent trajectory from infectious to non-infectious corporeality against the backdrop of the discursive history of HIV, with particular focus on the landmark Swiss Consensus Statement, and in the context of research with heterosexuals with HIV in Australia. In-depth interviews revealed that HIV corporeality was not a stable, homogenised experience across participants and time, nor did it simply follow medical discourses. Instead, HIV corporeality emerged as a contingent set of tensions between conflicting discourses of infectiousness that were negotiated and made sense of within situated and embodied life histories. These findings pose challenges to the imperative of HIV normalisation and the related tendency in HIV prevention to universalise the notion of 'infectiousness'.

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.

When HIV-positive children grow up: a critical analysis of the transition literature in developed countries.

Young people with perinatally acquired HIV are routinely problematized in the research literature as inadequately equipped to manage transition to adolescent sexuality and adult clinical care without comprehensive interventions, partly because of challenges associated with adolescence itself, and partly because of neurocognitive and psychosocial dysfunctions commonly attributed to these children. However, little is actually known about this population, given their recent emergence in the HIV epidemic. Using critical discourse analysis, we argue that several problematic assumptions operate in this literature, hampering the objective of understanding these young people. Our analysis can contribute to a reframing of future research on HIV-positive adolescents, by encouraging greater attunement to the experiences of the adolescents themselves and to the discursive meanings that underpin research agendas, so that different and more productive questions can be asked and answered.

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.

Fear, complacency and the spectacle of risk: the making of HIV as a public concern in Australia.

This article explores how HIV is constituted as a matter of public concern in Australia, where - unlike much of the rest of the world - there is a continuing low incidence of heterosexual transmission. In this context, it is timely to explore how the media contributes to the ongoing mobilization of public interest in HIV, and how heterosexual audiences are brought into focus as the imagined ;publics' of mainstream debates on HIV. This article identifies three approaches to generating public concern in HIV news stories published in The Sydney Morning Herald between 2000 and 2005 as well as in academic media analysis and HIV education and advocacy. Reflections on fear revisit the early years of the epidemic, distinguishing a generation of Australian audiences shaped by the Grim Reaper campaign. Encounters with complacency focus on an apparently widespread lack of concern about HIV in the present. And projections in risk forecast a multiplication of HIV risk environments, despite confusion about who should be personally concerned about those risks. Together they construct Australian publics as passive, vulnerable, unaware and potentially uncaring, yet do little to engage the mainstream as more than spectators of public concern about HIV.

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.

"Vibrant Entanglements": HIV Biomedicine and Serodiscordant Couples in Papua New Guinea.

The global ambition to "end AIDS" hinges on the universal uptake of HIV treatment-as-prevention and is undergirded by the assumption that biomedical technologies have consistent, predictable effects across highly diverse settings. But as anthropologists argue, such technologies are actively transformed by their local encounters, with various constitutive effects. How priority populations, such as HIV "serodiscordant" couples, negotiate treatment-as-prevention remains relatively unknown. We consider the "vibrant entanglements" that can shape couples' engagement with global biomedical technologies in the local context of Papua New Guinea (PNG)-a relatively uncharted biomedical landscape-and what we hope our current research in this setting will achieve.