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.
Introduction
Throughout the history of HIV and viral hepatitis, ‘risk’ has been at the core of both expert and popular perceptions of these transmissible and stigmatised blood-borne viral infections, such as: their danger to the community, transmissibility and who is most vulnerable to exposure to these viruses, how governments should protect public health, and how to pitch prevention messages. The concept of risk has animated and authorised these various discourses and practices, rendering them intelligible as they have morphed over time. Representations of HIV, for example, have spanned the gamut of indiscriminately super-contagious in the early epidemic (Brandt, 1986; Eisenberg, 1986) to today’s framing of HIV as untransmittable when clinically undetectable in a person’s blood, thanks to game-changing advances in HIV medical science (Cohen et al., 2011; Rodger et al., 2019).
Prevention is the orthodox antidote to transmission risk and comprises changes to behaviour and practice, including biomedical interventions. There is a substantial body of public health research and social research on risk and prevention among couples with mixed viral infection status (serodiscordance), particularly in relation to HIV (e.g. Persson, 2013; Persson and Hughes, 2016; Bryant et al., 2010; Lasry et al., 2014; Mendelsohn et al., 2015; Morris et al., 2014; Rance et al., 2018). But what about other close and significant relationships? Recently we made the case that serodiscordance often extends to other family members, beyond the intimate couple (Persson et al., 2017). Yet we know very little about perceptions of risk or prevention practices in families affected by HIV and viral hepatitis. How do family members engage with understandings of infectiousness? And how do such engagements shape family relationships in different ways?
In this article, we draw on an exploratory qualitative study to identify issues and themes of ‘risk’ in families living with mixed viral infection status in Australia. In contrast to the ‘realist’ approach to conceptualising risk as an objective and independently knowable and thus measurable threat, we view risk as a relational and socially situated process (Douglas, 1966; Lupton, 1999, 2013; Rhodes, 1997; Wilkinson, 2010). Guided by cultural theories of risk that build on the seminal work of Mary Douglas (1966), we explore the ‘performativity’ of risk (Montelius and Nygren, 2014), to unravel what perceptions and practices of transmission risk ‘do’ within the relational field of families; what they create, enable, defuse or quell. We show how the performance of risk within families was a performance of difference: that is, approaches to risk had the capacity to either disrupt the family connection by marking the diagnosed family member as ‘different’, or to safeguard the connection by rejecting any notion of danger and difference. Part of this latter approach was a reframing of ‘risk’ from an internal threat to the health of the family to an external threat driven by social stigma. In short, we show that risk in the context of serodiscordant families had relational implications far beyond viral transmission or prevention. We conclude by considering what our findings might mean for service provision and health promotion campaigns related to the prevention of blood-borne viruses and the flourishing of family relationships.
Blood-borne viruses
It is important to acknowledge that HIV and viral hepatitis (specifically hepatitis C and hepatitis B here) are different in crucial respects. Although these epidemics are all blood-borne, their transmission routes differ (Russell et al., 2011). Globally, HIV is transmitted primarily through sexual intercourse, but also the sharing of needles and the transfusion of unscreened blood. Hepatitis C is most commonly transmitted through the sharing of injecting equipment and less commonly through sexual contact and transfusion of unscreened blood. Hepatitis B is chiefly transmitted from mother-to-child or in early childhood due to inadequate screening and vaccination programs, but can also be transmitted through sexual contact, shared injecting equipment, donor blood, and other healthcare procedures. In Australia, where our research took place, HIV is primarily transmitted through condomless sex (mostly between men who have sex with men), hepatitis C through the sharing of injecting equipment, and most people with hepatitis B in Australia were exposed to hepatitis B in their countries of origin.
HIV affects the immune system, while viral hepatitis targets liver function, and all are considered serious infections with long-term health consequences. There is no cure or vaccine for HIV, but it can be effectively managed with early and lifelong treatment, reducing the risk of sexual transmission to close to zero (ASHM, 2018). Hepatitis C can now be cured through recent advances in treatment—direct-acting antivirals (DAA)—which are publicly subsidised for Australians. By the middle of 2019, 70,260 people had been cured of hepatitis C with DAA (Kirby Institute, 2019). Hepatitis B transmission can be prevented with a vaccine, or else managed with treatment proved to reduce liver disease (Kirby Institute, 2018). Besides these medical therapies, current prevention strategies for these viruses also include prophylaxis (condoms, PEP, PrEP) and microbicides (for HIV), infection control (e.g. childbirth and breast-feeding protocols, wound care, not sharing injecting equipment, razors and toothbrushes), as well as testing for blood-borne viruses by those who are sexually active or inject drugs, especially those who are sexually intimate or inject drugs together with a partner diagnosed with a blood-borne virus.
Notwithstanding their differences, these three blood-borne infections also share important characteristics, which set them apart socially from many other health conditions. Foremost among them are their transmissibility and potential infectiousness and, crucially, the social stigmatisation of those who are diagnosed with them. It is these shared aspects that frame our exploratory study and our analysis in this article, with the aim of generating new insights into the relational dynamics of ‘risk’ in serodiscordant families.
Almost half a million people are estimated to live with one or more of these viruses in Australia (Kirby Institute, 2018). But their impact extends far wider, if we consider the family members of diagnosed people (Persson et al., 2019). Research that touches on the family context of blood-borne viruses suggests that perceptions of infectiousness and transmission risk are typically characterised by misinformation about the specific virus. This can manifest in family members being reluctant to touch, hug, or kiss the person with the virus, or refusing to share towels, bedding, cooking utensils or food with them (e.g. Audet et al., 2013; Persson, 2013; Bogart et al., 2008; Cotler et al., 2012; Ellard and Wallace, 2013; Jones et al., 2013; Kohli et al., 2012; Owiti et al., 2015; Thi et al., 2008).
The idea (and fear) that viruses can be transmitted through everyday activities and interactions, or through the mere presence of an infected ‘other’, is referred to as the ‘miasmic’ approach to infectious diseases (Douglas, 2003[1992]: 114–115). 1 These misconceptions characterised the early HIV epidemic in particular (Eisenberg, 1986; Lupton, 1994). While the idea of miasmic transmission is less commonly observed in public discourses today, it has not necessarily disappeared, as we show in this article. In addition, research has found recent examples of these misconceptions in relation to hepatitis B in some communities (Carabez et al., 2014; Owiti et al., 2015; Thi et al., 2008). However, fear of contagion is only part of the story, particularly as knowledge and the medical treatment of blood-borne viruses have advanced considerably in recent times. As we illustrate, our analysis found that approaches to risk were varied and intricate, with families invoking or rejecting narratives around illness, medical science, illicit drug use, sexual practice, love and loyalty to make sense of these viruses and to manage their potential risk and impact on the relational world of the family. To help us understand this, we review key developments in the theorising of risk.
Theorising risk
Anthropologist Mary Douglas is widely seen as the originator of the cultural theory of risk. She objected to the positivist or ‘realist’ idea of risk as something objective, as a pre-existing entity that can be calculated and avoided through accurate knowledge. Instead, she forged an understanding of risk as a profoundly collective, intersubjective process, often entangled in emotions, power and politics. In her early work (1966), she argued that social groups seek to maintain internal order and conformity by mobilising ideas around ‘danger’ and ‘pollution’ as a device to create a symbolic boundary between inside and outside, between accepted norms and deviant otherness. In her later work, Douglas turned to examine the concept of risk itself and developed an anthropological account of risk through a collection of essays (2003[1992]), which explored how risk draws on the notion of ‘blame’ to maintain group solidarities.
Douglas’ work was followed by other key traditions within sociocultural conceptualisations of risk, such as ‘risk society’ (Beck 1992; Giddens, 1990) and governmentality theory (Lupton, 1999; Rose, 1999). These similarly situate risk as a productive, socially embedded force in advanced modernity, highlighting how risk discourses operate to regulate society, institutions and human life. Together, these theories probe risk as a modality of existence and as a facet of contemporary political power. And while they take individual agency into account, they shed less light on intersubjective and relational dynamics of risk, something which Douglas’ work lends itself more readily to, and which is highly relevant to our focus on family contexts.
Building on these theoretical foundations, scholars in sociology and kindred fields approach risk as a phenomenon that is far from neutral, static or devoid of multiple meanings. They consider how risks are located and take shape within specific sociocultural and historical contexts and within the matrix of everyday personal relations and circumstances, whereby competing logics and stakes come to bear on the ways people perceive and negotiate risks (Fox, 2002; Lupton, 1999, 2013; Wilkinson, 2010). Tim Rhodes (1997) refers to this as a ‘socially situated’ paradigm of risk, a paradigm that has been applied to analyses of HIV and hepatitis C (e.g. Persson, 2013, 2016; Barrett et al., 2007; Lafferty et al., 2018; Rhodes and Treloar, 2008; Slavin et al., 2004). From this perspective, understandings and practices around risk are not necessarily predictable, but rather contingent ‘ways of making sense of situations’ and relationships (Lupton, 2013: 638). That is, when people assess risk, they draw from an ‘assemblage’ of cultural systems of meaning, expertise, norms and values, as well as personal experiences, emotions and priorities, to decide ‘what is acceptable and harmless against what is dangerous or threatening’ (Lupton, 2013: 638).
This perspective is pertinent to our present analysis, and of particular interest is the question of what these different approaches to risk can ‘do’ or, indeed, ‘undo’ in specific relational contexts. Here we draw inspiration from Elin Montelius and Katarina Nygren’s (2014) work on the ‘performativity’ of risk, which partly builds on Douglas. Although their analysis focuses on moral discourses around food and eating habits, it is greatly applicable to our discussion too. In developing their analysis, Montelius and Nygren extend on Judith Butler’s (1990) theory that gender is not an a priori or natural fact, but is performatively constituted through the repetition of particular acts. The same can be said for risk. They combine this theory with Douglas’ (1966, 2003) argument that definitions of ‘danger’, ‘dirt’ and ‘pollution’ are instruments of social ordering and community cohesiveness: they have a normalising function by marking out that which is ‘out of place’ and ‘other’, that which does not belong. Pivotal here is the enmeshed, constitutive relationship of risk and difference. As Montelius and Nygren (2014: 440) state: ‘the doing of risk is articulated and intertwined with the doing of difference’.
Specific to our analysis in this article, Deborah Lupton (2013: 639) similarly argues that the production of various public health risks is often entangled in the ‘emotional production of Otherness’. That is, public health risks are performative of difference; singling out those who are perceived to pose a threat to the safety or ‘integrity of the symbolic body of the nation’, or the community – or indeed the family in our case. Their bodies ‘are typically viewed as “risky” because they depart from the norm of accepted embodiment’ (Lupton, 2013: 640). The response to such threats, according to Douglas (2003: 115), is to protect the community or oneself through the ‘exclusion of outsiders, and repression of deviants’.
In short, the performativity of risk is an intersubjective and embodied process of trying to make sense of and manage situations, relationships and worlds. In this process, ‘the doing and undoing of risk may be used as a resource’ in struggles over, for example, power, identity, or allegiance, and attributions of value, morality or blame (Montelius and Nygren, 2014: 440). Seen in this way, unpacking the specifics of how risk is performed, and why, becomes an important task. An analysis that seeks to understand ‘the different ways that risk discourses are taken up, resisted or negotiated’ (Montelius and Nygren, 2014: 433) has so far not been explicitly applied to the context of serodiscordant families. Our analysis aims to provide an initial step towards addressing this gap.
Methods
My health, our family was the first study to document the experiences of serodiscordant families in Australia. As part of the study we conducted in-depth interviews with people living with HIV, hepatitis C or hepatitis B, and with people who had family members living with one or more of these viruses (Persson et al., 2019). The study received ethics approval from relevant institutions (see Acknowledgements).
People with blood-borne infections were recruited for interviews through study promotions distributed through email lists, clinic waiting rooms, and online/print forums of support organisations and networks. We used an arms-length approach whereby people contacted the research team to partake in the study. To recruit family members, we used referral sampling, whereby initial participants nominated family members for potential inclusion in the study. Family members deemed by the researchers as suitable to include were then approached by the initial participants themselves, inviting those interested to contact the researchers. Family members were also able to contact the research team directly, without being referred through a family member. Importantly, the study made clear that the parameters of ‘family’ could be self-defined by participants and could include partners, parents, children, siblings, pets and extended family, as well as families of choice, affinity, or intimate connection (Drysdale et al., 2020) (Table 1).
Number of participants by infection and perspective.
In-depth interviews were conducted throughout 2017 and 2018 with 61 people in total, including 31 people with one (or more) of the three blood-borne viral infections, 15 family members, and 15 people who fitted both categories. The participants were demographically diverse: ages ranged from 15 to 85 years old; 34 participants identified as female (including two transwomen) and 27 as male; 42 identified as heterosexual and 19 as either gay, lesbian, bisexual, queer or trans; 38 were born in Australia and 23 were born in African, Asian or European countries. Family members included mothers, sisters and daughters (four each), 12 partners, two step-parents, and one each of a son, brother, father and close friend.
Data collection focused primarily on metropolitan Sydney and surrounding regions in New South Wales, the state with the largest population of people with HIV, hepatitis B and hepatitis C (Kirby Institute, 2018; MacLachlan et al., 2018). Just under a third of the interviews were conducted with participants from other states. Interviews were conducted either in person or by phone/video-apps depending on participant preference. We used a semi-structured interview guide to explore the family impacts of diagnosis and disclosure, the relational dynamics of family life in the context of serodiscordance, how participants made sense of and responded to stigma and secrecy, and how they negotiated any unfolding responsibilities associated with care and treatment. We discuss a range of these issues in several forthcoming and published articles (Persson et al., 2019; Drysdale et al., 2020). Thus, the scope of the study was much broader than the focus of this article.
Interview recordings were transcribed verbatim, checked for accuracy and de-identified. All participants were assigned a pseudonym. Transcripts were imported into the qualitative data software program QSR NVivo 12, 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 the key questions of interest in the study, as well as any additional areas that were identified as important to analyse in the interviews. For this paper, codes capturing narratives on risk, infectiousness and prevention were analysed in detail to build a nuanced understanding of similarities and differences across the interviews. The analysis was conducted by the first author and followed the principles of thematic analysis, which is the foundational and most common method for qualitative analysis. It involves inductive identification of recurrent and divergent themes in the data, providing the most useful method for our analysis because of its emphasis on rich description and theoretically informed interpretation of patterns of meaning (Braun and Clarke, 2006). The analysis and draft manuscripts were then workshopped by the writing team, drawing on the areas of expertise of each author.
We acknowledge that the lived experiences of serodiscordant families are diverse and complex. In this qualitative study, our analysis was not intended to be exhaustive, nor do we make any claims to representativeness. Moreover, our aim was not to pursue a comparative analysis based only on the distinctions between each virus. Rather, we have taken a sociological perspective on the discourses of infectiousness and risk that surround these stigmatised viruses to understand how these are articulated, negotiated and made meaningful for a diverse group of people who belong to families affected by blood-borne viruses in Australia. We are particularly interested in understanding what is accomplished by deploying different risk discourses in the context of family lives, and what this might reveal about the relationality of stigmatised infections and about risk more broadly, both socially and conceptually.
Findings
Doing risk and difference
Despite significant advances in the treatment of blood-borne viruses and the unlikely probability of transmission in casual, everyday interactions, the ‘miasma’ theory of contagion referred to by Douglas (2003) surfaced in some of our interviews. This occurred across cultural backgrounds and across all three viruses, and had a marked effect on diagnosed participants’ sense of family belonging. A few family members that had clung to outmoded ideas around infectiousness and risk demonstrated their fear by suddenly treating their diagnosed family member in a new way, with wariness or, in some cases, with outright hostility. For example, when 24-year-old Lauren was diagnosed with HIV 2 years ago, she disclosed her status to her family. She received ‘amazing’ support from her grandmother, but her older brother reacted very differently: His reaction to it was to tell me I’m a slut. And to tell me not to share food with my niece and nephew, because he doesn’t want me to give [HIV] to my niece and nephew . . . He had no clue. He just assumed any kind of bodily fluid, including saliva [was infectious]. When I tried to explain it, he just got narky [irritated] with me and didn’t speak to me for nearly three months . . . Even now I only speak to him kind of very occasional . . . And he’s never apologised for what he said, and that’s what causes the biggest issue. But he never admitted he was wrong.
Ignorance about transmission led to Lauren being branded as different and excluded from her brother’s family. For several participants, fear of a similar scenario eventuating in their own lives posed a major barrier to disclosing their diagnosis to family members. One of them, 33-year-old Nhu, was reluctant to disclose her hepatitis B diagnosis to her in-laws who, like Nhu, were immigrants to Australia from East Asia. She explained that there was ‘still stigma and discrimination around hep B’ in her migrant community, because many incorrectly believed the virus could be transmitted through sharing food and drinks. Communal eating is an important social and family practice in many Asian cultures, and this informed Nhu’s decision to keep her diagnosis secret: A lot of people think they can transmit by sharing food. And people will not be happy to be at the same dining table with other people living with hep B. Especially in our culture . . . Like everyone uses chopsticks to dip into the same little bowl of dipping sauce . . . I think that may be one of the reasons that I don’t want to tell my in-law family, because I still want to be at the same table with them.
Being excluded from sharing food was a reality for 66-year-old May, an immigrant from South East Asia. She had disclosed her HIV status to her son and daughter-in-law, whom she lived with, along with their two young children. Although she described them as ‘tolerant’ of her condition, she felt they were uninformed and cagey around potential infectiousness, avoiding bodily contact and not allowing their children to share food and cups with their grandmother. To May, this was hurtful and made her feel they no longer accepted her unconditionally; that she was ‘not part of the family’. Not only had May’s diagnosis changed her bodily status, therefore, but her status in the family too. Her situation partly unsettles Douglas’ theory; not all families responded to a perceived risk by completely excluding the diagnosed member to ‘protect’ themselves (as Lauren’s brother did), because the family connection, or at least a sense of family obligation, took precedence. Hence, the diagnosed person, in this case May, ended up in a strange, liminal position in which she was still sharing the domestic household with her family, yet now marked as ‘different’ to the rest of them.
Stigmatised practices and difference
The ‘doing’ of difference did not always pivot on perceptions of risk or the virus itself, but on the risk of being perceived as ‘the sort of person’ who engages in socially stigmatised practices that can lead to infection with a blood-borne virus. We saw this with Lauren being labelled a ‘slut’ by her brother, for example. Luke, a 30-year-old gay man, was initially reluctant to tell his family of his HIV diagnosis, fearing their attitude towards him would change: ‘There was a lot of shame and a lot of guilt . . . I felt that they would view me differently . . . that they would not be as accepting of me as a person in the family’. Fortunately, Luke’s family was supportive when he eventually did tell them. However, that was not the case for everyone, most notably among the 19 participants whose stories involved a history of illicit and/or injecting drug use. Several of them had been alienated from their families when their drug use became known. Fifty-four-year-old Emily noted that ‘drug use is such a . . . super-stigmatised thing that I think families really struggle with a way to make sense of that’. She described how, for many years, it was her drug use that became, to use Douglas’ language, ‘excluded’ and ‘repressed’ by silence, which had left her feeling set apart from her family: I had a breakdown with my entire family for nearly 10 years or something . . . [It] wasn’t directly about hep C, but it was about injecting drug use, and so it’s associated. So then, you know, because they couldn’t handle that aspect of my life, I didn’t see much point in talking to them about anything else . . . I understand, you know, it’s the way that drug use, particularly injecting drug use, is characterised in society . . . My mother in particular kind of, you know, went off the deep end about it and really couldn’t reconcile, just couldn’t reconcile it, you know?
Others with a history of injecting drugs were reluctant to disclose their diagnosis, particularly to their parents, concerned that they would disappoint them. It took Sebastien, aged 53, two decades to disclose his hepatitis C status to his mother, because he ‘feared’ her finding out about his, as he put it, ‘misspent youth’ as a ‘reckless, careless, drug-user’. He finally told her when he developed liver cirrhosis: ‘I explained that I was deeply ashamed of the lack of care I had taken for the body that she had given birth to and nurtured, and I’d just treated so, like it was of no value’. The social stigma around drug use had other rippling effects, forcing even supportive family members into at least a partial silence around the viral diagnosis to avoid the risk of ‘othering’ affecting the family, as Sebastien’s mother, Victoria, aged 80, reflected: I didn’t ever talk about [hepatitis C] outside that inner circle. And I’m not sure whether that’s because I don’t want to feel ashamed about it to other people . . . I want to protect Sebastien’s reputation and legacy, yes. But also, maybe it’s because I don’t want to admit to the fact that I had a son that did all these things and, therefore, he got hep C.
Those participants whose families did not engage in the ‘doings’ of risk and difference or, as Lupton (2013: 639) put it, the ‘emotional production of Otherness’, described their family’s acceptance and support as distinct from the cultural norm, given the drug-related stigma surrounding hepatitis C. As George said: ‘I know they love me and that’s a really big support. I think that’s probably the biggest support. “We love you Dad no matter what”. They don’t judge me. They’ve never, ever said anything negative about my past’. On the same theme, 48-year old Hannah elaborated: There is gross stigma and discrimination . . . [but] despite all of that public stereotyping of hep C and people who have hep C, none of that would affect my relationship with my family. And so it strengthened my understanding of what we’ve got [as a family].
Hannah’s quote provides an apt segue to an opposing theme, which we explore below: the ways in which many families framed perceptions of transmission ‘risk’ as in itself posing a risk to the family connection.
Undoing risk and difference
In contrast to the above stories, in many interviews risk was not raised as a family concern and was even sometimes dismissed as a valid theme in making sense of their experiences of serodiscordance. This comment by Sarah, aged 50, for example, was far from exceptional: ‘I have no recollection of [there] being, you know, any concerns about me transmitting [HIV] to my family. So, no separate cups. No anything like that happened’. Emotions are intimately implicated in the production of risk, as Lupton (2013) argues. But emotions also work the other way around, by rejecting risk and, by extension, difference. That is, risk itself can be ‘othered’ by emotions, as that which must be excluded to protect the family. We recall here Montelius and Nygren’s (2014: 440) point that, it is not only the ‘doing’ of risk that ‘may be used as a resource’ in struggles around, among other things, identity and allegiance, but also the ‘undoing’ of risk.
This ‘undoing’ emerged as a prominent theme in our study. Many family members we talked to responded to news about the diagnosis with empathy rather than with fears about transmission risk. Their overwhelming concern was the health and survival of their diagnosed family member, not their own potential exposure to infection. As Helen, aged 58, emphasised: ‘Nobody ever indicated to me that they were worried about [hepatitis C] transmission. All they were worried about was me’. Similarly, 48-year-old Hannah said: I was concerned about talking with my brother-in-law, who I thought would have reacted strongly about [me] possibly exposing his two kids to hep C, because I hadn’t told them before. But he was just wonderful . . . And he said, “Oh Hannah, I’m really sorry to hear that.” He said, “Well, as a family, we’ll get through everything together.” It was just the best.
Indeed, concerns about personal risk were often framed as incompatible with the desire to provide support to the diagnosed family member, including when their diagnosis had occurred prior to the availability of effective treatments (Persson et al., 2019). Many families explicitly shunned the miasma theory of contagion, or what Hannah described as ‘infectious propaganda’. Instead, narratives of love, family, solidarity and science were prioritised and mobilised to displace notions of risk. Although most family members were initially ignorant about blood-borne viruses and associated risks, many quickly informed themselves by doing research, or else accepted the diagnosed family member’s assurances about the lack of transmission risk in everyday contexts, especially in conjunction with a modicum of culturally normative prevention practices (e.g. wound care, not sharing toothbrushes and razors). Importantly, this elimination of risk also worked to invalidate any perceptions of difference. ‘It’s not something to be afraid of’, as Jessica, aged 52, said of her sister’s HIV status: ‘We treat her the same way that we treat everybody. It’s no different. None at all. So, you know, it doesn’t matter . . . it’s irrelevant’.
Family members’ rejection of risk can of course be read in many ways, given the layers of complexity that likely shape this process (including our sampling method). But if we follow the idea that risk is performative of difference, as Montelius and Nygren (2014) argued, then it makes sense that an emphasis on transmission risk can imperil a family’s normal existence and connection, their sense of a cohesive ‘us’. Indeed, the risk of risk itself tended to amplify closeness, with families banding together and circling the wagons, creating a sense of collective strength. Douglas (2003: 117) noted that social groups ‘develop solidarity in shared adversity’. Danger, according to her, operates as a community glue, stitching people together against a shared perceived threat. Here, the danger was the potential disruption to the unity and well-being of the family brought about by the diagnosis and its attendant risks, fore mostly in the form of social stigma and ignorance. This led to caution around disclosing to outsiders, as saw earlier in the quote from Sebastien’s mother Victoria. Another mother in her 70s, Rosemary, whose daughter was diagnosed with HIV in the late 1990s, explained: [With] any other child who is diagnosed with a life-threatening illness, you can turn to friends and family . . . and tell them really what’s going on. We couldn’t because people were far too judgemental, and they still are. This is a disease that is transmitted sexually, so people immediately form judgements about the person. So, to protect [my daughter], and ourselves as well, from that type of critical judgement, it was kept quiet.
As this quote suggests, risk was inverted into something that was external to the family, and the ‘exclusion’ and ‘repression’ that Douglas described as protective responses to perceived risks took the form of secrecy in relation to outsiders to shield the family from stigma and prejudices.
Risk and blame
Blame, as Douglas proposed, is a common social response to perceived risks, but it was far from straightforward in these family contexts, particularly in relation to intrafamilial transmission, which revealed its own, often delicate, performativity of risk and difference. Six participants had acquired hepatitis B or HIV perinatally through mother-to-child transmission, and at least six had acquired hepatitis C or HIV from a partner through sex or shared injecting equipment. A brother and a sister had both acquired hepatitis C through sharing needles with each other. Risk and blame figured as complex and often contested themes in these stories. For example, 48-year-old Grace did not blame her husband for her HIV infection, but her children did and refused to have any contact with their father. Recrimination towards intimate partners was relatively rare, though some felt remorseful for having themselves exposed a loved one to the infection: ‘I do carry quite a lot of guilt around my [ex-partner] having hepatitis C, you know’, Emily said. ‘Because he wasn’t an injector before he met me’.
Recrimination towards parents was similarly muted, often construed as meaningless or as detrimental to the unity and solidarity of the family. Daniel, aged 18, acquired HIV perinatally and did not know which parent had transmitted HIV to the other. To him, trying to establish who was at ‘fault’ was irrelevant, because neither of his parents had been aware of their HIV status prior to their diagnoses. Yet he was wary of people’s readiness to assign blame, intruding into his family’s private affairs and the consequences this could have for his parents: ‘So we try not to tell like close family because . . . they would start raising questions, like blaming my mum and blaming my dad and stuff’. This desire to protect parents from culpability and ‘othering’ was expressed by other participants who had likely acquired their infection perinatally, including 33-year-old Nhu: [S]ometimes people pretend to be expert by saying, “Oh, you know, your mum has hep B and then you must have like [acquired] it from your mum.” I don’t like it. That’s really bad. I know there may be some possibility that I got that from my mum, but . . . even if it’s for sure that I got that from my mum, I still don’t want people to talk about that, because it’s just like make her feel really bad. And that doesn’t help . . . [I] just don’t like my mum to feel bad.
When blame towards parents did surface in a couple of stories it was tangled within broader themes of childhood adoption, perceived parental recklessness, or a lack of accountability. One example was 28-year-old Chloe who expressed much anger at her parents and another family member for neglecting to test themselves for hepatitis C, despite having injected together when they were young. This had resulted in an unresolved web of transmission among the adults and their children, which to Chloe’s great frustration remained shrouded in silence and denial within the family, apparently because her parents simply could not face acknowledging that history.
Prevention and testing
The doings and undoings of risk and difference played out in practices related to prevention and testing. As described earlier, the miasma theory, with its foothold in a few of the families, manifested in excessive and largely erroneous strategies to avoid infection. The vast majority of families, however, relied on very basic infection control principles (e.g. wound care, condoms, not sharing razors or injecting equipment), or had not implemented any such practices at all, seeing it as unwarranted in domestic milieus. Several families affected by HIV explicitly rejected the idea that any specific precautions were necessary with today’s treatment, clearly drawing on the contemporary discourse of ‘undetectable = uninfectious’, or U = U. There was otherwise little difference across the three viruses, with the exception of vaccination of children among participants with hepatitis B, as well as some caution around potential re-infection among those who had cleared hepatitis C but were still injecting or had a serodiscordant partner.
Viral testing was a similarly marginal theme. Most relatives reported not testing for a relevant blood-borne virus following their family member’s disclosure, and this topic was often only touched on when prompted by the interviewer, perhaps signalling many families’ desire to ‘undo’ risk and difference by rejecting any need for testing. Some participants were unsure whether their relatives had tested, primarily because of a lack of discussion around testing in many families. Typically, however, those potentially exposed to a virus through direct bodily or blood contact – sex, birth, injecting – such as partners and children, had been tested, which is appropriate. In a few families, the disclosure of a diagnosis prompted other members to also get tested, not because of any risk posed by their diagnosed relative, but because of their own sexual or injecting history. In only three cases (one from each virus category) had everyone in the family been tested following a member’s diagnosis, in two cases to determine complex intergenerational transmission. But overall, the lack of emphasis on testing by family members suggests another example of the performativity of risk as a ‘resource’, whereby these highly stigmatised infections were normalised and reframed as posing no threat to the family and, thus, to the family connection (Persson et al., 2019).
Concluding reflections
Our findings provide compelling insights into the meanings of risk within families affected by blood-borne viruses. Most notably, we found that among the families in our study, the ‘risk’ of these viruses was not isolated to concerns about transmission. Hence, we contend that, in this context, risk is not an objective phenomenon located within individual bodies, posing a potential threat to other bodies. Rather, as theorists have convincingly argued, concepts and understandings of risk operate as intersubjective processes, configured and negotiated through social relations situated within specific cultural and historical contexts (Lupton, 1999, 2013). As such, concepts of risk can be mobilised as a ‘weapon or tool’ of moral judgement and social exclusion, or as a resource of solidarity and support (Douglas, 1966; Montelius and Nygren, 2014). In short, risk is performative.
The historicity and performativity of risk make understandings and practices of risk inconstant and contingent. In the context of serodiscordant families, it is important to analyse risk alongside stigma, because perceptions of risk in relation to HIV and viral hepatitis are understood through persistent conditions of stigma, which are fuelled by lack of knowledge and a history of negative representations of these viruses, of those who are diagnosed with them, and of the practices that can lead to infection. But not predictably so; the potential risk of these viruses – including their stigma – is assessed and navigated through relational histories, love and loyalty, medical science, and other cultural and emotional meaning systems that help families make sense of the virus in their midst and manage its impact on their lifeworld and connection. We have shown how the ‘doing’ of risk within families could be constitutive of difference, unsettling the family connection or deepening existing fault lines. Conversely, and more commonly, 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.
Our findings suggest that family-inclusive practice in the context of prevention, care and support services focus on the ways that cultural and emotional systems of meaning orchestrate how some people living with a blood-borne virus may belong, and how others may be ostracised from family. Perceptions about viral transmission risk are perhaps less important than the deeply ingrained cultural beliefs about social order and disorder that (re)produce some people as deserving of support and others as not. By working in a family-inclusive way, healthcare workers, informal carers and the blood-borne virus workforce should aim to work with deliberate sensitivity to these diverse systems of meaning across families. For example, while in some contexts the messages of a cure for hepatitis C, treatment for hepatitis B and undetectability for HIV may be useful in reducing stigma, it is less meaningful in other contexts in which people, including family members, hold discriminatory beliefs about the moral worth of a person who acquires a blood-borne virus or the moral worth of a person who uses drugs or whose sexuality is non-heteronormative. Family-inclusive health promotion messages could usefully focus beyond educating about transmission risk (although these messages are important fundamentals), and emphasise the ways that families, and indeed, communities, can sustain a cohesive and supportive dynamic, in spite of, and because of, difference.
While our findings provide new insights into the meanings of risk in serodiscordant families, they are not intended to be representative of all such families. Qualitative research involves the in-depth analysis of accounts of lived experiences, which means our findings must be interpreted in relation to the specific contexts and conditions in which these accounts were collected. In addition, our sample size, though large for a qualitative study, is not intended to permit comparative analysis between participants and viral infections. Nonetheless, while recognising that there are many differences across these experiences, and that there will be differences again between these accounts and those pertaining to other contexts, our findings highlight initial yet important issues that are likely to have broader relevance, both to families in similar situations and to understandings of risk.
Footnotes
Acknowledgements
Many thanks to all participants with lived experience, their families, and stakeholders, who generously shared their time and stories with us. Thanks also to the members of the project Advisory Committee, and other partner organisations who supported us 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, Seattle 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. Research support and other key contributions were also provided by Dr Kerryn Drysdale, Dr Rebecca Gray, Dr Jessica Botfield, Dr Jake Rance, Dr Lise Lafferty and Dr Jialing Cui.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported under Australian Research Council Discovery Project funding scheme (DP160100134). The views expressed herein 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.
Ethical approval
Ethical approval was provided 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.
