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

Abstract

The “my health, our family” research project was established to document stories of what serodiscordance (mixed infection status) means for Australian families affected by HIV, hepatitis B, and/or hepatitis C. A family mapping exercise was developed for the start of interviews as a way to conceptualize serodiscordance as a movement of “closeness” and “distance” within the relational networks that participants defined as “family,” the outcome of which was originally intended as a guide to explore the contributions of each family member in the in-depth qualitative interviews that followed. Such static representations of family were soon revealed to be inadequate for capturing the contingent, flexible, and multifaceted nature of familial relationality in the management of these infections. In this article, we explore these shifts for the conceptual openness mapping methods facilitate, and the constraints they reveal, for spatializing family relations in ways that heed diverse experiences of serodiscordance.

Digitized HIV/AIDS Treatment Adherence Interventions: A Review of Recent SMS/Texting Mobile Health Applications and Implications for Theory and Practice

“…On the one hand, the advent of combination anti-retroviral therapy (cART) allows an HIV/AIDS diagnosis to be managed increasingly as a chronic condition; on the other hand, barriers to adequate HIV care result in disparate outcomes for those living with HIV/AIDS (White House Office of National AIDS Policy, 2016; Crepaz et al, 2020;Essuon et al, 2020). It is well-documented that HIV/AIDS is a highly stigmatized condition (White House Office of National AIDS Policy, 2016; Drysdale et al, 2020), and PLWH, who are more likely to be diagnosed with other stigmatized conditionse.g., poor mental health status, psychiatric disorders, substance use disorders-may be further stigmatized because of these negatively viewed, compounding conditions, which interfere with adherence to care (White House Office of National AIDS Policy, 2016; Centers for Disease Control, 2018;Sullivan et al, 2019).…”

Family imaginaries in the disclosure of a blood‐borne virus

“…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 and extended family, as well as families of choice, affinity or intimate connection (Drysdale et al, 2020).…”

“…While these viruses are undoubtedly different, they share several modes of transmission, but more importantly are associated with similar types of social stigma and discrimination. Although the framing of serodiscordance in the HIV literature is primarily focused on concerns about transmission risk, the concept of serodiscordance can be used as a way of thinking about the social and relational processes that occur across mixed BBV status families (Drysdale et al, 2020;Persson et al, 2017Persson et al, , 2019.…”

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

“…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).…”

“…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.…”