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

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.

Family imaginaries in the disclosure of a blood‐borne virus

“…Importantly, our study recruited participants who had maintained some connections with family, however, that was defined by participants, and so the stories we heard may have reflected families in which at least some members were more accommodating of serodiscordance than would be typical of many other family cultures. Nevertheless, there were still negative experiences described by our participants, as explored in more depth in other publications from this study (Persson et al, 2019(Persson et al, , 2020. Although participants were invited to define family for themselves, when discussing disclosure, the focus was typically on family of origin, perhaps reflecting that certain forms of family matter in different ways, and certainly that the biological family retains immense social power (McCarthy, 2012;Morgan, 2011;Smart, 2007).…”

“…Interviews were conducted either in person or by phone/video apps depending on participant preference or location. 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, and publications from this study have focused on aspects of these topics (Newman et al, 2018; Persson et al, 2019, 2020; valentine et al, 2020) (Table 1).…”

Stigma, shame and family secrets as consequences of mental illness in previous generations: A micro-history approach

“…The choice between disclosure and secrecy is especially difficult if the illness could be considered shameful or stigmatising. There may be concerns for the ongoing functioning or safety of the family, along with fear of being rejected or stigmatised if the illness is associated with deviant behaviours (Persson et al., 2022; Smith et al., 2021). While the costs of disclosure may be high, the burden and potential outcomes of maintaining secrecy are also considerable and may have ramifications many years later.…”