Families Living with Blood-Borne Viruses: The Case for Extending the Concept of “Serodiscordance”

Abstract

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

Social Determinants of Stigma and Discrimination in Vietnamese Patients with Chronic Hepatitis B

“…Our study repeatedly endorsed the essential role of spouses/partners and the family as a whole in CHB management. The previous literature consistently acknowledged families as a crucial source of support for those with viral infections, and patients often depend on their primary relationships for supports in the inadequate medical care infrastructure, especially in family-oriented societies like Vietnam [20]. In addition, CHB requires a long-term treatment which may impose a substantial financial burden on patients and their families [25,26].…”

“…To measure stigma and discrimination, we referred to the Substance Abuse Self-Stigma Scale by Luoma et al [18], and adapted the conceptual framework by Parker and Aggleton which is used to measure stigma against the MMT (methadone maintenance treatment) and HIV/AIDS population [19]. The previous literature suggested that HIV and HBV infections share various characteristics including transmission routes, social stigma, and impacts on marginalized communities [20]. The final tool included four dimensions: (1) Blame/Judgment; (2) Shame; (3) Discrimination in various settings (workplace, healthcare services, family, and community); (4) Disclosure of CHB status.…”

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

“…Research has highlighted the practical, social, and political impact of HIV, HBV, and HCV on families, including economic security, caregiver stress, and culturally specific interpretations (Cotler et al, 2012; Hu, 2008; Ma et al, 2011; Owiti et al, 2015; Rodrigue et al, 2009; Rotheram-Borus et al, 2005). This suggests that family members also live with stigmatized, transmissible viral infections in their own right (Persson et al, 2017). As the role of families in the management of these infections is often hidden, especially in the recognition that forms of informal care are often invisible to support services (Hamilton et al, 2018; Neufeld et al, 2008), it is not surprising that families’ own support needs tend to be elided in public health responses because of the emphasis on transmission risk that has characterized the concept of serodiscordance to date.…”

“…In short, any experience of HIV, HBV, or HCV is fundamentally relational (DeMatteo et al, 2002), not only in how these blood-borne viruses are acquired, transmitted, or prevented but also, as we have argued elsewhere, “because they are inexorably enacted, perceived, and managed through a range of socially situated relationships, meanings and practices” (Persson et al, 2017). There is a strong case, then, for the concept of serodiscordance to be expanded to capture wider familial relations and to recognize the complex and contingent socio-emotional dynamics of family engagement (Persson et al, 2017). Accordingly, one of the tasks at hand is capturing and interpreting the ways that people define family in the context of living with socially stigmatized blood-borne viruses.…”

“…Several studies reveal the everyday complexities of the ways that couples are living with and making sense of HIV and HCV (Davis & Flowers, 2011;Persson, 2013;Persson & Hughes, 2016;Rance et al, 2017Rance et al, , 2018Rhodes & Cusick, 2000). In recent years, researchers have also begun to apply serodiscordance to wider familial relationships outside of the couple (Newman et al, 2018;Persson et al, 2017;Smith et al, 2017). These applications point to an expanded capacity for the concept of serodiscordance to connect individuals to others in ways that acknowledge the relationally embodied lifeworlds in which people are entwined or enmeshed (Persson et al, 2019).…”