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1.
Med Anthropol ; 43(1): 31-45, 2024 01 02.
Article in English | MEDLINE | ID: mdl-37988129

ABSTRACT

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.


Subject(s)
HIV Infections , Sexual Partners , Humans , HIV Infections/prevention & control , Papua New Guinea , Anthropology, Medical
2.
Med Humanit ; 49(1): 48-54, 2023 Mar.
Article in English | MEDLINE | ID: mdl-35710625

ABSTRACT

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.


Subject(s)
HIV Infections , Hepatitis C , Humans , Hepacivirus , Social Stigma
3.
Cult Health Sex ; 25(9): 1214-1229, 2023 09.
Article in English | MEDLINE | ID: mdl-36476229

ABSTRACT

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.


Subject(s)
HIV Infections , Hepatitis B , Hepatitis C , Self-Management , Virus Diseases , Humans , Hepatitis C/therapy , Hepatitis B/prevention & control , Logic
4.
Health Sociol Rev ; 32(2): 145-160, 2023 07.
Article in English | MEDLINE | ID: mdl-35980804

ABSTRACT

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.


Subject(s)
Hepatitis B , Hepatitis C , Virus Diseases , Humans , Hepatitis C/prevention & control , Hepatitis C/diagnosis , Hepatitis B/prevention & control , Hepatitis B/diagnosis , Virus Diseases/prevention & control , Hepacivirus , Social Stigma
5.
Health (London) ; 26(3): 284-301, 2022 05.
Article in English | MEDLINE | ID: mdl-32744122

ABSTRACT

'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.


Subject(s)
HIV Infections , Hepatitis, Viral, Human , Virus Diseases , Humans , Sexual Partners , Social Stigma
6.
Sociol Health Illn ; 43(6): 1422-1436, 2021 07.
Article in English | MEDLINE | ID: mdl-34160829

ABSTRACT

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.


Subject(s)
HIV Infections , Viruses , Disclosure , Family , Humans , Qualitative Research , Self Disclosure , Social Stigma
7.
Sociol Health Illn ; 42(8): 1837-1857, 2020 11.
Article in English | MEDLINE | ID: mdl-32767697

ABSTRACT

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.


Subject(s)
HIV Infections , Sexual and Gender Minorities , Australia , HIV Infections/drug therapy , Humans , Male , Sexual Partners , Viral Load
8.
Qual Health Res ; 30(5): 793-808, 2020 04.
Article in English | MEDLINE | ID: mdl-31830855

ABSTRACT

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.


Subject(s)
Communicable Diseases , HIV Infections , HIV Seropositivity , Australia , Humans , Qualitative Research , Sexual Partners
9.
Soc Sci Med ; 243: 112620, 2019 12.
Article in English | MEDLINE | ID: mdl-31675515

ABSTRACT

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.


Subject(s)
Disease Transmission, Infectious , Family Relations/psychology , Family/psychology , Social Stigma , Stereotyping , Virus Diseases/genetics , Virus Diseases/psychology , Adult , Aged , Aged, 80 and over , Australia , Female , Humans , Male , Middle Aged
10.
Med Anthropol ; 38(3): 267-281, 2019 04.
Article in English | MEDLINE | ID: mdl-30431335

ABSTRACT

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.


Subject(s)
HIV Infections/ethnology , Sexual Partners , Anthropology, Medical , Biomedical Technology , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Papua New Guinea/ethnology
11.
AIDS Behav ; 23(7): 1846-1857, 2019 Jul.
Article in English | MEDLINE | ID: mdl-30306435

ABSTRACT

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.


Subject(s)
HIV Infections/prevention & control , Health Equity , Health Promotion/statistics & numerical data , Pre-Exposure Prophylaxis , Adult , Australia/epidemiology , Female , Humans , Male , Middle Aged , Prospective Studies
12.
Health Soc Care Community ; 26(4): 486-494, 2018 07.
Article in English | MEDLINE | ID: mdl-29336111

ABSTRACT

SMS reminders sent to personal mobiles are increasingly used by clinical services to promote patient engagement, including adherence to antiretroviral treatment (ART) for HIV. From August to September 2015, a 6-week, randomised SMS reminder for ART adherence intervention was implemented among 98 HIV-positive clients of Australian's largest HIV charitable organisation located in Sydney. This was followed by a mixed-method evaluation, comprising a self-completed online survey and a one-to-one interview. Of the 62 survey participants, all being men, the majority were gay (85.5%) and living long-term with HIV (median year of HIV diagnosis = 1998). While everyone was on ART, a substantial proportion (n = 27, 43.5%) had interrupted treatment in the past. At the end of the intervention, based on the standard SMAQ measure, 82% had consistently adhered to ART in the previous week. While there was no statistically significant intervention effect, perceiving less stigma were independently associated with better ART adherence (adjusted odds ratio = 0.37; 95% CI 0.16-0.89; P = .026). Of the 11 interviewees, despite limited add-on effects on individual ART adherence, the campaign was well-received as a unique community support service. This study underscores the essential role of empowerment through enhancing disease self-management, increasing social support and reducing stigma, particularly for long-term HIV survivors. SMS messaging, part of mHealth, delivered by community services could have broader impacts on reducing health and social inequity.


Subject(s)
Anti-Retroviral Agents/therapeutic use , HIV Infections/drug therapy , Medication Adherence , Reminder Systems , Text Messaging , Adult , Aged , Anti-Retroviral Agents/administration & dosage , Australia , Cell Phone , Community Networks , Homosexuality, Male , Humans , Male , Middle Aged , Odds Ratio , Social Stigma , Social Support , Telemedicine
13.
Interdiscip Perspect Infect Dis ; 2017: 4352783, 2017.
Article in English | MEDLINE | ID: mdl-29230242

ABSTRACT

The concept of "serodiscordance" (mixed infection status) is primarily associated with epidemiological concerns about HIV transmission risk in couples. We make the case for extending this concept to include families with mixed HIV and viral hepatitis status. Social research on couples with mixed HIV and hepatitis C status has laid an important foundation for illuminating how experiences of serodiscordance within intimate partnerships are much broader than concerns about risk. This body of work attests to serodiscordance holding promise as a valuable concept for understanding viral infections as socially situated and intensely relational phenomena. However, serodiscordance is still limited as a concept because of its near universal focus on couples. It is rarely applied to wider relationships, including family networks beyond the couple. Despite evidence in the literature that families are affected by blood-borne viruses in multiple social, emotional, financial, and generational ways, the concept of serodiscordance does not capture these broader dynamics. Making serodiscordance more inclusive is an important step in recognising the diverse ways families' everyday lives, relationships, and futures can be entangled with HIV, hepatitis C, and hepatitis B, and for understanding how today's era of effective treatment options might shape the "family life" of viral infections.

14.
Med Anthropol ; 36(8): 699-713, 2017.
Article in English | MEDLINE | ID: mdl-28323441

ABSTRACT

With recent breakthroughs in HIV treatment and prevention, the meanings of HIV-positivity and HIV-negativity are changing at biomedical and community levels. We explore how binary constructions of HIV serostatus identities are giving way to something more complex that brings both welcome possibilities and potential concerns. We draw on research with couples with mixed HIV status to argue that, in the context of lived experiences, serostatus identities have always been more ambiguous than allowed for in HIV discourse. However, their supposed dichotomous quality seems even more dubious now in view of contemporary biomedical technologies. Invoking the anthropological concept of "borderlands," we consider how biomedicine is generating more diverse serostatus identities, widening the options for how to live with HIV, and eroding the stigmatizing serostatus binary that has haunted the epidemic. But we also ask whether this emerging borderland, and its "normalizing" tendencies, is concomitantly giving rise to new and troubling binaries.


Subject(s)
HIV Infections/prevention & control , HIV Seropositivity/psychology , Sexual Partners/psychology , Adult , Aged , Anthropology, Medical , Female , HIV Seronegativity , Humans , Male , Middle Aged , New South Wales , Spouses/psychology
16.
Med Anthropol Q ; 30(3): 359-77, 2016 09.
Article in English | MEDLINE | ID: mdl-26756317

ABSTRACT

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.


Subject(s)
HIV Infections/drug therapy , HIV Infections/ethnology , Medication Adherence/ethnology , Adult , Anthropology, Medical , Antineoplastic Agents/therapeutic use , Australia/ethnology , Female , Humans , Male , Middle Aged , Practice Guidelines as Topic
17.
AIDS Care ; 28(1): 131-6, 2016.
Article in English | MEDLINE | ID: mdl-26477602

ABSTRACT

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.


Subject(s)
Anti-HIV Agents/therapeutic use , HIV Infections/congenital , HIV Infections/drug therapy , Medication Adherence , Transition to Adult Care , Adolescent , Australia , Female , HIV Infections/psychology , Humans , Interviews as Topic , Male , Qualitative Research , Young Adult
18.
Sociol Health Illn ; 38(3): 380-95, 2016 Mar.
Article in English | MEDLINE | ID: mdl-26360799

ABSTRACT

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.


Subject(s)
HIV Infections/prevention & control , HIV Seropositivity , Sexual Partners , Sexuality , Adult , Aged , Anti-Retroviral Agents/therapeutic use , Australia , Female , HIV Infections/drug therapy , Humans , Male , Middle Aged , Qualitative Research , Risk Factors , Sexual Partners/psychology , Social Stigma
19.
AIDS Patient Care STDS ; 29(5): 267-78, 2015 May.
Article in English | MEDLINE | ID: mdl-25806574

ABSTRACT

Current debates regarding the use of antiretroviral therapy (ART) to promote both individual- and population-level health benefits underscore the importance of understanding why a subpopulation of people with diagnosed HIV and access to treatment choose not to use it. Semi-structured interviews were conducted between 2012 and 2014 with 27 people living with HIV in Australia who were not using ART at the time of interview. Analytic triangulation permitted an appreciation of not only the varied personal reasons for non-use of treatment, but also underlying views on HIV treatment, and the ideal conditions imagined necessary for treatment initiation. Policy goals to increase the number of people with HIV using ART must recognize the diverse explanations for non-use of ART, which include concerns about the various impacts of committing to lifelong pharmaceutical treatment use. Our research identified distinctive subgroups among people who are not using antiretroviral therapy, with a range of individual and social needs that may affect treatment decisions. These findings challenge assumptions about treatment non-use in resource-rich settings, revealing persistent consumer fears about the potent and unknown effects of HIV medications that deserve greater recognition in policy debate on treatment uptake.


Subject(s)
Antiretroviral Therapy, Highly Active , HIV Infections/drug therapy , Patient Acceptance of Health Care , Adult , Aged , Australia , Health Behavior , Health Services Accessibility , Health Services Needs and Demand , Humans , Interviews as Topic , Middle Aged , Qualitative Research , Socioeconomic Factors
20.
AIDS Educ Prev ; 26(3): 245-55, 2014 Jun.
Article in English | MEDLINE | ID: mdl-24846487

ABSTRACT

In Australia, unlike much of the rest of the world, HIV transmission through heterosexual contact remains a relatively rare occurrence. In consequence, HIV-prevention efforts have been firmly focused on male-to-male sex as the most frequent source of HIV transmission. There are emerging signs that this epidemiological landscape may be shifting, which raises questions about current and future HIV prevention strategies. Over the past decade, national surveillance data have shown an increase in HIV notifications for which exposure to HIV was attributed to heterosexual contact. This paper offers an epidemiological and sociocultural picture of heterosexual HIV transmission in Australia. We outline recent trends in heterosexually acquired HIV and discuss specific factors that shape transmission and prevention among people at risk of HIV infection through heterosexual contact. To illustrate the contextual dynamics surrounding HIV in this diverse population, we detail two key examples: HIV among people from minority ethnic backgrounds in New South Wales; and overseas-acquired HIV among men in Western Australia. We argue that, despite their differences, there are significant commonalities across groups at risk of HIV infection through heterosexual contact, which not only provide opportunities for HIV prevention, but also call for a rethink of the dominant HIV response in Australia.


Subject(s)
HIV Infections/prevention & control , HIV Infections/transmission , Heterosexuality , Sexual Behavior/ethnology , Australia/epidemiology , Emigrants and Immigrants , Ethnicity/statistics & numerical data , Female , HIV Infections/epidemiology , Humans , Male , Population Surveillance , Qualitative Research , Risk Factors , Sex Factors , Socioeconomic Factors , Travel
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