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The freighted social histories of HIV and hepatitis C: exploring service providers’ perspectives on stigma in the current epidemics
  1. kylie valentine1,
  2. Anthony Smith2,
  3. Asha Persson2,
  4. Rebecca Gray2,
  5. Joanne Bryant2,
  6. Myra Hamilton3,
  7. Jack Wallace4,
  8. Kerryn Drysdale2,
  9. Christy E Newman2
  1. 1Social Policy Research Centre, University of New South Wales, Sydney, New South Wales, Australia
  2. 2Centre for Social Research in Health, University of New South Wales, Sydney, New South Wales, Australia
  3. 3Work and Organisational Studies, University of Sydney Business School, The University of Sydney, Sydney, New South Wales, Australia
  4. 4Burnet Institute, Melbourne, Victoria, Australia
  1. Correspondence to Dr kylie valentine, UNSW, University of New South Wales, Sydney, NSW 2052, Australia; k.valentine{at}unsw.edu.au

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.

  • Social science
  • Infectious diseases
  • cultural history

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Introduction

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 (Fraser and Seear 2011; Kippax and Stephenson 2016; Patton 1990; Sendziuk 2003; Treichler 1999). HIV has been described as the ‘most ‘social’ of diseases’ (Walker 2019, 97), and in both HCV and HIV the clinical and social dimensions of risk, transmission and treatment are inextricably bound. Although very different in many respects, the histories of the viruses have converged in recent years around increased therapeutic optimism and dramatic improvements in treatment outcomes (Kenworthy, Thomann, and Parker 2018; Lancaster, Rhodes, and Rance 2020). For HIV, as Hamilton et al. (2018) summarise, effective combination antiretroviral treatments began to transform and extend the lives of people with HIV in high-income settings from the mid-1990s, radically changing ‘the way the disease is experienced and conceived, from a disease linked with high mortality, to a chronic illness in need of ongoing management where a person can live a ‘normal’ life’ (Hamilton et al. 2018). Changes in the effectiveness and tolerability of HCV treatment have been more recent. Direct-acting antiviral drugs can cure HCV without the debilitating side effects of previous therapies. They have been made available in Australia through the national system of publicly subsidised pharmaceuticals (the Pharmaceutical Benefits Scheme) since 2016, which provided the means through which the Australian Government’s Fifth National Hepatitis C Strategy 2018–2022 could commit to achieving the previously unthinkable goal of the ‘elimination of hepatitis C as a public health threat’ (Australian Department of Health 2018, 5)

These changes have enormous implications for people living with HIV and HCV. The social history of medicine shows that progress in treatment outcomes always has social meaning, and in the cases of these bloodborne viruses (BBVs) the impact of such dramatic changes in treatment is of particular interest, because of their associated histories of social stigma (Fraser and Seear 2011; Northrop 2017; Persson 2013; Squire 2010). These changes, and these histories, also have significant implications for those who care for people living with these stigmatised infections. This is the case for providers of informal care, such as family and friends; and for providers of formal care, that is those who work in the HIV and HCV healthcare and social support sectors. Social histories influence the experience of people who live with the viruses, and those who work with them, and these experiences influence the ongoing social histories of the viruses (Hacking 2002b; Hacking 2002a). 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.

Biographical disruption, integration and narrative

For decades, the medical humanities have been building on the work of Bury (1982) and others who conceptualised the experience of chronic illness as a biographical disruption. Illness is an event that changes and rearranges people’s understandings of themselves, their relationships and identities, and their future. The response to this disruption is generally a process of interpreting and finding meaning from that event, and integrating that meaning into those identities and relationships. This is a kind of biographical rewriting, and recent scholarship has pointed to the importance of narrative and story-telling in the integration process: ‘making meaning of life events is often done in a narrative way, by telling stories that configure separate events into a meaningful whole. By constructing stories, people try to make sense of their experiences’ (Hartog et al. 2020, 3).

Illness is often characterised as an individual experience, and much of the scholarship on biographical disruption has focused on the person living with illness. More recently, this scholarship has been revitalised by its deployment of illness as a social, relational occurrence, shaping and shaped by intimate and familial lives (Hudson et al. 2016; Race and Wakeford 2000; Wilson 2007). Similarly, the literature on serodiscordance, or mixed infection status, has been extended from its traditional focus on intimate partners to encompass families (Persson et al. 2017). Chronic illness happens to families, affecting both those who are diagnosed and family members who are not. The experiences of biographical disruption and integration become part of the stories that families tell about themselves (Smith et al. 2021). For families, as for individuals, telling these stories is a way of making sense of those experiences, and of maintaining and keeping alive their sense of themselves and their place in the world. Those denied such stories, for example, by forced adoption or dislocation, are also denied this sense of self (Swain and Musgrove 2012).

When the experience of diagnosis is of a highly stigmatised and politicised condition, as in the case of HCV or HIV, the processes of disruption and integration are inflected with these social meanings and negotiated in diverse ways. The social histories of BBVs become part of the personal and familial histories of affected people. In the contemporary moment of broad clinical optimism about treatment, changes to both the prognosis of people living with the viruses, and the social meanings of these viruses, brings particular risks and meanings. These may include pressures to feel as though HIV and HCV are simply ‘normal’ diseases with no stigma attached, and to disregard the range of long-term impacts and potential complications of treatment and ongoing forms of emotional, practical and financial care that are often still provided by family members (Persson 2013; Walker 2019) (Smith et al. 2021).

The BBV workforce and care relationships

Relationships within and between families and care providers are critical to the experiences of diagnosis, biographical disruption and reintegration. Our focus in this article is on the experiences of those healthcare practitioners who work with people living with BBVs and their families. We are concerned especially with the impact of the social histories of these infections on the personal and professional identities of the HIV and HCV workforce, and the impact in turn of these histories on professional practice. We argue that the key concepts of disruption, integration and the incorporation of illness history into biographical narratives, can be extended further than it has been in recent scholarship, to better understand the relationship between patients, families and service providers which intersect around specific illness experiences.

The early years of the HIV pandemic were massively disruptive and distressing to those working in the field, evidenced by the growing archive of documentary and literary texts recounting these years (Bradford 2018; De Moor 2003; Reynolds, Robinson, and Sendziuk 2021; Varsalone and Deering 2016). Newman et al's. (2016) research on the Australian HIV general practitioner (GP) workforce has described HIV’s ‘intense symbolic resonance (which) was embedded in a complex array of cultural anxieties and morally charged meanings around selfhood, corporality, suffering, and mortality’. This has resulted in ongoing emotional investment by the ‘first generation’ of those who provided care in the pre-antiretroval therapy (ART) era, and who remain protective over the space of HIV care (Newman et al. 2016). The biographical disruption and integration experienced by service providers is also related to the stigma of HIV and HCV. Service providers confront, and are affected by, the stigma and discrimination experienced by people living with HIV and HCV (Persson et al. 2014; Yates 2014).

The workforce is also, however, a source of stigma and other harms for people living with BBVs and their families. While people with BBVs may experience hostility and discrimination from family, friends and employers, recent Australian research shows that healthcare services are among the settings in which stigma is most frequently experienced by people with HIV and HCV (Cama et al. 2018). The BBV workforce is large and diverse, and includes both people with a strong affiliation with affected communities and others who are distant from those communities. Workforce experiences of stigma are similarly diverse, as some service providers experience stigma themselves (Brener et al. 2019; Haber, Roby, and High-George 2011), while others are stigmatising and discriminatory in their views and in their practices (Brener et al. 2019; Broady et al. 2018).

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 research questions for the project were: How do families negotiate any disruptions to everyday life associated with serodiscordance? Do issues of shame, stigma and secrecy play a role in families’ management of serodiscordance? How do families negotiate the range of unfolding responsibilities associated with care and treatment?

The article explores the perspectives of members of the BBV workforce who were asked about their experiences in working with serodiscordance in families. Interviews revealed that changing social meanings given to BBVs, 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.

Methods

My health, our family was the first study to document the experiences of families with mixed infection status, or serodiscordance, of BBVs in Australia. The core activities of this 3-year qualitative study included: a critical examination of the literature on families and caregivers affected by HIV, HCV or hepatitis B virus (HBV) (Persson et al. 2017; Newman, Persson, and Ellard 2018); in-depth interviews with people living with one or more of these infections, and with their family members; and interviews with service providers working in the BBV sectors. The parameters of ‘family’ were self-defined by participants and included partners, parents, children, siblings, pets and extended family, as well as families of choice, affinity or intimate connection.

In-depth interviews were conducted throughout 2017 and 2018 with 81 people in total: these included 31 people with one (or more) of the three BBV infections, 15 family members, 15 people who fitted both categories and 20 expert service providers. Interviews with service providers were conducted to document their views and experiences on the management of bloodborne infectious diseases, such as dynamics within families relating to HIV, HBV and HCV, managing disclosure issues within families, involving family members in clinical consultations and care decisions, gaps in services and supports for families, and any other issues affecting family members. Participants were purposively selected with a focus on service providers employed in the health and social care sectors with experience in working with families affected by BBVs, as well as policy leaders employed in government and non-government organisations with an interest in related areas of family and community well-being. Interviews were conducted either in person or by phone/video-apps depending on preference. Key informants were recruited for their expertise and experience. Most were English-speaking and Australian born, but there was some diversity in cultural and language background, as well as age, and sexual diversity. Two-thirds were women, and three quarters were based in New South Wales. Professional perspectives were fairly evenly distributed among sectors with more counselling/social work professionals than policy/research, health promotion/communication and medical/nursing professionals. There were equal numbers of government and non-government organisations represented, and although there was a slight weighting towards HIV as an area of expertise, all of the BBVs were well represented.

Interview recordings were transcribed verbatim, checked for accuracy and de-identified. All participants were assigned a number. Transcripts were imported into the qualitative data software programme QSR NVivo, to enable the data to be managed effectively during the coding process. The coding framework was co-developed by all members of the research team through multiple individual readings of transcripts followed by several team discussions and agreement on optimal codes to capture key themes covered in the interviews. The analysis for this article was conducted by the first author and followed the principles of inductive thematic analysis (Braun and Clarke 2006), identifying recurrent patterns in the data and testing these through comparison with variations both within potential themes and across the whole data set. The analysis and draft manuscripts were then workshopped by the writing team, drawing on the areas of expertise of each author.

In this article, we focus on the data from the interviews with service providers, and most of the discussion is about HCV and HIV. During coding and preliminary reviews of these interviews, patterns of narrative emerged on personal and social histories that directed our attention to the scholarly literature on biographical disruption and integration described above, and this literature informed our analysis. As we note in other papers, based on interviews with family members (Newman, Persson, and Ellard 2018), there are several reasons for the relative lack of discussion on HBV, to do with understandings of the virus in Australia and its modes of transmission and diagnosis here. More research and understandings of stigma in relation to HBV is greatly needed, not least because it is prevalent in very diverse communities in Australia. Illustrative quotes have been edited in the interests of readability and some periphrastic language, repeated words and discourse markers have been deleted.

Patient involvement

Individual patients were not directly involved in the design of the project. The project was guided by an Advisory Committee (see Acknowledgements) representing a range of professional perspectives on the prevention and treatment of BBVs, and on supporting the well-being of families, carers and intimate relationships. Advisory Committee organisations include consumer and/or patient representation in their governance or operations. All of the materials used for recruiting and conducting the interviews were developed in collaboration with the Advisory Committee, as representatives of organisations who work with and on behalf of affected families.

Findings

Change and progress over time

In interviews, service providers shared a strong sense of progress and improvement in the experiences of affected people, especially those affected by HIV. They described, in positive terms, changes to medical and community knowledge of HIV, and changing community attitudes to LGBTQI+ people. Fears of transmission and homophobia which dominated earlier periods of HIV were described as different now, and for the better. Participant 12 (P12), who works in the HIV sector, specified improved awareness of transmission as part of a broader shift in attitudes.

I think it’s really different today than it would have been 25, 30 years ago because I think back then there was a lot of fear and ignorance, and stigma around, you know, you know, a blood-borne virus or certainly HIV/AIDS. I think that’s changed a lot and because I think there’s been certainly working in sexual-health areas there’s a lot of normalisation or education around the transmission. (P12, HIV)

P2, who also works in the HIV workforce, said that changes in the way that people living with HIV are recognised in the community and in treatment settings have changed the care provided in services, but the memory of earlier harms is still important to current practices.

I think the passion [ for my work ] comes from understanding the history of the evolution of HIV, and understanding that, in the early days of HIV being discovered and society, and the community becoming aware of it, that it created a lot of hysteria and a lot of fear, and a lot of really negative stigma. And that the early people living with HIV were certainly, you know, dealing with discrimination on a daily basis in relation to whether they were accepted in their workplace or accepted in their community, or accepted by their friends and families. (P2, HIV)

Similarly, P19, who works with people with HIV, HCV and HBV, said that the histories of HIV treatment have been based on assumptions that gay men do not have strong family connections and treatment approaches that ‘really (only) talks to gay men outside of their families’. Now, though, knowledge of HIV is now more widely, and less catastrophically, shared. This allows for the incorporation of social worlds and families, rather than an exclusive focus on sexuality and sexual practices in terms of risk.

I saw an interesting tweet this morning […]. A father going, ‘My son’s 15,’ or something like that. ‘He’s gay. How do I find out about PrEP?’ Profound, really. (P19, HIV, HCV, and HCB)

These interviews resonate with the findings from those conducted by Persson et al. (2014, 12)) who found that HIV clinicians ‘revealed an intriguing tension between describing HIV as normal yet special […] between positioning HIV as just another chronic illness vs highlighting its extraordinary history and the continuing stigmatisation and marginalisation of those affected’.

Yet a counter theme to this dominant narrative is of insufficient progress, and of social circumstances as bad as they ever have been regarding stigma and isolation. P8, who works in HIV, HCV and HBV, ties these circumstances not to general community attitudes, but to deliberate political strategies to foster intolerance from policy elites.

And because we’re not allowed to talk about all of this stuff, you know, because it involves either sex or drugs, it’s just so hard. It’s just so hard for people generally to have a really good understanding of what happens. They don’t teach this in schools […] there’s all of this stuff in the, the news recently about, you know, LGBTIQ, the Safe Schools program [a school-based sexuality program subject to intense conservative scrutiny from some sections of mainstream media and subsequent political interference in 2018 ], which has now been abandoned by the government, you know. And schools being able to discriminate against people who are LGBTIQ. It’s just disgusting. (P8, HIV, HCV and HCB)

For both those who regard the current moment as reflecting positive developments over time, and those who instead see a thread of persistent prejudices through this same period, the history of social stigma of HIV and HCV remains present in the current experiences of people living with the viruses and those who care for them.

Stigma is multiple

Interview participants talked about stigma as a continuing challenge for people living with BBVs, and for their own practice, regardless of any progress towards greater inclusion and advances in treatment and prevention. A notable feature of these accounts is the different meanings accorded to stigma. A rich, multidisciplinary literature has emerged on the concept over the 57 years since the publication of Goffman’s Stigma (Goffman 2009), which identifies distinct types of stigma. Pescosolido and Martin's (2015, 92) extensive review of the term, for example, identifies perceived, endorsed, anticipated, received and enacted stigma as experiential variants; and self-stigma, courtesy stigma, public stigma, provider-based stigma and structural stigma as variants based on action orientation. Stigma, and its associated concepts of shame and secrecy, was also evident in the interviews as a broad and capacious category, useful for describing a range of negative experiences.

One description of stigma resonates with Goffman’s description of ‘spoiled identity’, and associations with contamination. A participant in a group interview with two people who work together and work across all three BBV areas, talked about family members’ fear of transmission, including mistaken ideas about infection risk:

I think for many, many people, it’s that idea of, ‘I can no longer touch anyone. I mustn’t, you know. I need a separate set of cutlery and crockery.’ La, la, la. And then you explain to them, ‘No. You can’t, you’re not going to catch it from your loved one.’ (P13 and P14, HIV, HCV, HBV)

Another group interview, with two people who work in HIV, described the effects on families in terms of guilt and changed relationships.

Even in situations where they’re not sort of excommunicated, it’s something that, when they still have that sort of ongoing relationship with their family, like something that I pick up in a lot of conversations is that, from a, from the person living with HIV’s perspective, is they’re the less-valued member of the family. […] The way they see themselves within their family structure is, you know, of lesser value than some of their siblings (P15 and P16,HIV) .

P5, who works in HCV and HIV, similarly described stigma as synonymous with changed and damaged familial relationships:

Some of the families of our cultural and linguistically-diverse lines, and it’s not just those families but they’re the ones that really stand out, the stigma is a, a big problem. And often that is compounding stigma that’s already coming from those families about being gay or being someone who injects drugs, or being a sex worker. And there, there can often be big feelings of rejection from their families or shame. (P5, Aboriginal communities, HIV and HCV)

P8, who works in HIV, HCV and HBV, connected the stigma of the viruses with misguided fears about risks and prognoses.

You know, a number of my clients have wanted to actually say they’ve got cancer instead of saying they’ve got hepatitis C or HIV because that’s easier and people will accept them, and will comfort them, and will provide all sorts of different support for them. Whereas, if they told somebody they’ve got a blood-borne virus, whichever one it is, they could potentially be rejected. Part of the problem for families, you know, and affected people is that they have a fear of these viruses. They do not understand how they work. The problem for families is they think about themselves first. A lot of them don’t actually think about what it’s like for the person and what they’ve gone through, and how they’re feeling, and the grief and loss they’re feeling, and the fear of death. (P8, HIV, HCV and HBV)

Another rendering of stigma referred to community judgement and the response of people other than family members. P11, who works with people living with HIV, HCV and HBV, described a recent meeting with a man newly diagnosed with HIV.

The burden of secrecy is a huge one. Shame. The fear that they’re going to be judged . [I’m] working with a man in his 50 s who’s just been newly diagnosed, and he went into massive trauma after the diagnosis. […] I feel sad that people have to go through embodying that stigma and discrimination. (P11, HIV, HCV and HBV)

This lack of understanding was not only connected to ongoing misconceptions about transmission, but also newer misconceptions about the extent to which treatment outcomes have changed the experience of living with the viruses. A participant in a group interview with two people who work together and work across all three BBVs, described governments and politicians as responsible for this.

Politicians as well don’t understand. ‘Well, what’s wrong with people? There’s treatment. It’s good. They’re not going to die. And, you know, there’s PrEP and so, you know, we shall be ending, ending HIV any minute now.’ Well, no, we’re dealing with people who are suffering really with ongoing, high, high levels of stress and fear, and uncertainty […] They’re really disadvantaged within the communities by, by having an HIV diagnosis. (P13 and P14, HIV, HCV, HBV)

Addressing stigma through education

Although participants were not asked specifically about strategies for increasing information and awareness in the broader community, this topic recurred in the interviews. During interviews, participants argued that community education and health promotion should be key policy considerations, and that public awareness campaigns can address stigma. Information and education were presented as positive, and with positive effects.

P9 and P3, for example, both described the lack of broadly targeted campaigns as problematic, because changed treatment outcomes are not well known. Consequently, perceptions about treatment, and therefore stigma, were believed to remain the same as they were decades ago. A few participants mentioned the Grim Reaper campaign in this context, a series of television advertisements broadcast only a few times in Australia in 1987, and yet this brief campaign continues to be regularly invoked in discussions of HIV public health campaigns (Newman and Persson 2009).

So I think there’s been no real health promotion or prevention campaigns which, which have as their audience the wider community or family groups, or, you know, at all. (P9, HIV and HCV)

There’s a need to reduce HIV stigma overall and certainly in the broader community I think the information hasn’t caught up with the reality. So people still think in the, in the 1980 s or 90 s. (P3, HIV)

P8 also specifically tied a lack of understanding, including that of families, to a lack of information.

We know that 99.9 per cent of the cases now, with all three of those viruses, are going to live long-term and be well-controlled or, or cured if it’s hepatitis C. But families don’t understand that. The message isn’t out there. Nobody ever talks about it. You never see this in magazines. You don’t see it on billboards. (P8, HIV, HCV and HBV)

The need to address stigma associated with outdated misinformation and ignorance was also described by P20, in an argument that reveals some of the complexity of the connections between temporal change, treatment and the nature of the viruses. Biomedical interventions, on the one hand, make stigma irrelevant and a national campaign is needed to address ‘outdated views’. On the other hand, stigma is also identified here as a distinct, separable challenge from the promise of treatment.

With biomedical advances, it’s likely that we’ll be able to […] end the transmission of new infections or treat people to a level where its just living their best lives. Right? But it’s not about that now: it’s about stigma […] I think because of the limited resources, all of the HIV, sexual health, blood-borne virus campaigns are all targeted at the community most affected but it doesn’t, it doesn’t take into consideration the incredible burden that stigma plays, and misinformation, and ignorance. So I think a national campaign is definitely needed. We can’t contribute to a supportive environment if most of the people in those environments and communities have an outdated view that it’s really stigmatising. (P20, HIV)

The emphasis that participants placed on the need for mass information campaigns reflects the common belief that information campaigns are needed to change attitudes in the general community, not just within affected communities. Health service professionals themselves, however, are also an important source of stigma towards people with BBVs. This point was made by a couple of interview participants, who suggested that people working in BBV services forget that most people do not know as much about viral transmission and sources of viral contagion as them. The general community does not know as much about viral hepatitis as health service providers, and often will not know about the infection status of other people they meet in the course of their everyday life. In many contexts outside of health services, people living with a BBV will not experience any direct interpersonal stigma. Health service practitioners, in contrast, are more likely to know about the specific stigmatised practices and characteristics that are risk factors for BBVs, and are often privy to their clients’ BBV status. Insofar as stigma is a function of a known ‘spoiled identity’ (recall that Goffman’s use of the term was based on the visibility of stigmata), healthcare providers are among those who are therefore most likely to see enough of that identity to construct it as spoiled. P19 pointed to this likelihood, arguing that health service providers can be moralistic and judgemental around diseases such as HIV and HCV, as well as some other diseases in which individual health practices are associated with risk.

There’s a hierarchy. We [ also ] see it developing around things like diabetes [ and ] liver cancer. I mean, you know, your ordinary, community people don’t make those sort of connections but I think it can be, can be tricky particularly in GPs and stuff like that. (P19 HIV, HCV and HBV)

P5 similarly said that general community knowledge about HCV is lower than in the sector, but also believed that this is not reflected in the assumptions of health workers, who forget that their own knowledge is greater.

People working in this sector, the association between hepatitis C and injecting drug use is so strong that there’s an assumption that, if you tell someone you have hepatitis C, they’re immediately going to think you’re an injecting drug user. And my observations growing up, which I, you know, I didn’t really piece together until I started working in the sector, is that most people in the community [when someone discloses their status, will say] ‘Oh, what’s hepatitis C?’ (P5 HIV and HCV))

Discussion

Stigma and poor experiences with care are pervasive in the histories of HIV and HCV, and this also inflects the stories of service providers, who talk about these issues as both past and current concerns. Participant views differed on whether and to what extent the harms of stigma have changed over time, but these histories occupy a large space in the way that current circumstances are described. A striking feature of these descriptions is that stigma is manifested in different ways and comes from different sources: service providers talked about damage done to relationships with families, friends and employers; broader community opprobrium; and the internalisation of stigma and a harmed sense of self. Despite the multivalent nature of stigma described in interviews, participants argued for a single strategy to be deployed in response: a mainstream information and awareness campaign. A strong theme in the interviews was the need for more emphatic and visible communication of the message that both HIV and HCV are no longer a ‘death sentence’. Participants argued that this is needed for two reasons: first, these facts are not as well known as they should be, and second, it would be beneficial in counteracting stigma.

These insights from service providers raise intriguing, important questions, and some of these relate to the direct experiences of people living with the viruses. What are the benefits, and are there any disadvantages, to this freighted history being present in current conversations between affected people and service providers? What effect does the message that ‘this is no longer a death sentence’ have on people who have lived with the virus for a long time and managed treatment, social relationships and risk management in different contexts? What effect does it have on people who have not lived through previous periods of treatment outcomes, and who may not have extensive knowledge of the virus or its history?

The interviews raise other questions also, related to their advocacy for public information campaigns on stigma, to raise community information and awareness of treatment outcomes, and of the contemporary experience of living with HIV and HCV. That these campaigns were proposed by service providers indicates that in their experience a lack of information in the broader community is the source of much of the harms done to people living with BBVs and their families. A few service providers made a different point: healthcare workers tend to know more about the transmission of BBVs, especially the connection between injecting drug use and HCV, than the broader community. This resonates with findings from recent Australian research on stigma and discrimination, including from healthcare workers (Northrop 2017). A 2018 survey of people who inject drugs found that more than two-thirds of participants (70%) reported any negative treatment by health workers, including 25% who indicated that this was ‘often’ or ‘always’ the case. Of those who had ever been diagnosed with HCV, similar proportions reported negative treatment by health workers in relation to their HIV status (any negative treatment 71%, including 29% ‘often’ or ‘always’) (Treloar 2018). The experiences of people living with HIV and of men who have sex with men (MSM) indicates less frequent, but still common, experiences of discrimination. A survey of MSM found that a third of respondents reported any negative treatment by health workers (33%), including 3% who indicated this ‘often’ happened. A national survey of people living with HIV found similar proportions of negative treatment by health workers (any negative treatment 33% including 5% ‘often’ or ‘always’) (Treloar et al. 2018). These findings suggest that HIV and HCV stigma continues to be largely attributed to people who use drugs and, to a lesser extent, MSM. It is not specifically driven by treatment outcomes or risk of transmission, and the changes in treatment are therefore an uncertain means of addressing stigma. More broadly, the findings from the surveys and interviews suggest that information about HIV and HCV, especially the latter, may not be protective against stigma. Healthcare workers can be a primary source of stigma, and this may be driven in part by the fact that they are informed about transmission and the practices that lead to infection.

Moreover, as Seear (2020, 2) argues in the context of alcohol and other drug use, conceptualising stigma as the result of a lack of information is a far narrower interpretation than the recognised need for ‘interventions designed to change behaviour at the individual level, alongside structural reforms’. This narrow focus is also present in Australia’s National Drug Strategy 2017–2026, in which stigma is included ‘under the pillar of ‘demand reduction’, noting that strategies to reduce demand should include those focused on ‘improving community understanding and knowledge, reducing stigma and promoting help seeking’’ (cited in Seear 2020, 3). That service providers are of the view that improved information and help-seeking will address stigma is therefore unsurprising, given its inclusion in significant policy documents, but sustained research over decades indicates that stigma is far less tractable than this.

Conclusion

The histories of BBVs are alive in the present, and affect the experiences of people living with the viruses now: those whose diagnoses are recent and those who have lived with diagnosis for a long period; as well as those receiving treatment, and those who refuse or cannot receive it (Persson et al. 2016). These histories are also alive for people who work with affected communities in providing care and support, and for those who have worked for a long time in this area, the dramatic improvements in treatment often represent a profound change. Just as families integrate the stories of diagnosis and living with BBVs into their family history, so are changes in the way that the disease has been managed and treated part of the stories told by service providers.

Stigma and other harms also remain pressing concerns, and while the impact of improved treatment on stigma remains uncertain, stigma is a multidimensional, complicated phenomena and unlikely to be eradicated as a result of changes to treatment and prognosis. In particular, stigma attached to HIV and HCV is at least as associated with stigmatising attitudes about who people are, and the practices that place them at risk, as the curability or not of the virus.

The continued importance of fear and stigma, and the very diverse family experiences of people living with BBVs, suggests implications for practice in health and social care service settings, because of the care and support that service providers can assume will be provided outside these settings. Our interviews with service providers, and with families living with BBVs (Persson et al. 2019), indicate that the experience of stigma and rejection is not universal. Changing community attitudes as well as changing treatment options and norms means that some affected people will not experience the isolation and harms that were once common. Families are loving, supportive and non-stigmatising in many cases. This, however, also adds to the complexity of identifying and responding to people’s needs for care and support. For people living with BBVs and their families, their encounters with health services may be deeply sympathetic and committed to combatting prejudice, or they may be stigmatising and harmful. Workers in those services providing care to people with BBV may be part of a strong and supportive network in which family and friends are also important. In other cases, these workers will be supporting people who are isolated from their families and distressed by this isolation.

Data availability statement

No data are available.

Ethics statements

Patient consent for publication

Ethics approval

This study involves human participants and was approved by the Sydney Local Health District (RPAH Zone) Human Research Ethics Committee (16/RPAH/513), the ACON Research Ethics Review Committee (2016/21) and the Aboriginal Health and Medical Research Council of NSW Ethics Committee (1213/16). Site-specific ethics approvals were provided by the Sydney Local Health District (RPAH Zone) Research Governance Office, the South East Sydney Local Health District Research Governance Office, the Illawarra Shoalhaven Local Health District Research Governance Office, and the Sydney Children’s Hospital Network Ethics Committee. Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The authors thank all of the individuals with lived experience, their families and key informants, who generously shared their time and stories with them. The authors also thank Dr Kerryn Drysdale, Dr Rebecca Gray, Mr Anthony K J Smith, Dr Jake Rance, Dr Lise Lafferty, Dr Jialiang Cui and Dr Jess Botfield for research support and other key contributions. The authors also thank the members of the project Advisory Committee, and other partner organisations who supported them with recruitment, including: ACON; Carers NSW; Concord and Canterbury Hospital Gastroenterology Units; Hepatitis ACT; Hepatitis NSW; Hepatitis SA; Illawarra Shoalhaven Sexual Health Service; Kirketon Road Centre; Multicultural HIV and Hepatitis Service; Paediatric HIV Service, Sydney Children’s Hospital; Positive Life NSW; Pozhet (Heterosexual HIV Service of NSW); Prince of Wales Hospital Liver Clinic; Relationships Australia NSW; Relationships Australia SA; Royal Prince Alfred Hospital Gastroenterology Unit; Royal Prince Alfred Hospital Sexual Health Clinic; St George Hospital Liver Clinic; Sydney Sexual Health Centre; The Albion Centre.

Bibliography

Footnotes

  • Twitter @anthonykjsmith

  • Contributors All authors contributed to conceptualisation, analysis, and writing. CN is lead CI on the project. Analysis and writing on this paper were led by KV who is guarantor of this publication.

  • Funding This research was supported under Australian Research Council’s Discovery Project funding scheme (DP160100134). The views expressed here are those of the authors and are not necessarily those of the Australian Research Council. The contributions of the investigator team were supported by the Centre for Social Research in Health and the Social Policy Research Centre at UNSW Sydney, both of which receive some support from UNSW Arts and Social Sciences, and by the Australian Research Centre in Sex, Health and Society and The Burnet Institute. All of these research groups receive funding from a range of external agencies.

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

  • Provenance and peer review Not commissioned; externally peer reviewed.