My health, our family

Critical perspectives on serodiscordance in family life

Christy Newman, Asha Persson, Joanne Bryant, kylie valentine, Kerryn Drysdale, Anthony Smith, Rebecca Gray (UNSW Sydney)
Myra Hamilton (University of Sydney)
Jack Wallace (Burnet Institute)

The clinical management of blood-borne viruses has changed rapidly in recent years. Yet, social stigma remains a persistent issue. Families that include people with mixed viral status (also known as ‘serodiscordance’) play a critical role in supporting those who have been diagnosed with HIV, hepatitis B and/or hepatitis C. However, little is known about the role and experiences of families in the prevention, management and treatment of these viruses.

Researchers at the Centre for Social Research in Health (UNSW Sydney), in collaboration with the Social Policy Research Centre (UNSW Sydney) and The Burnet Institute, received funding from the Australian Research Council to conduct a three-year qualitative Discovery Project (DP160100134) to document – for the first time – firsthand accounts of what serodiscordance means in the context of everyday family life.

In this study, we set out to:

• describe the experiences of families in Australia affected by HIV, hepatitis B and/or hepatitis C
• understand how differences in family forms and contexts intersect with understandings of and approaches to the prevention, management and treatment of these viruses in family life
• build a theory of serodiscordance which is informed by the lived experiences of affected families and extends beyond a biomedical focus on individual health and risk.

Our research activities included a critical examination of the literature on families and caregivers affected by HIV, hepatitis C or hepatitis B, along with in-depth interviews with:

• people with a primary lived experience of being diagnosed with one or more blood borne virus (HIV, hepatitis B or hepatitis C) (‘primary participants’)
• people with a family member who has been diagnosed with one or more blood borne virus (HIV, hepatitis B, and/or hepatitis C) (‘family participants’)
• key informants working in the health and social policy, care and advocacy sectors, with particular expertise in blood borne viruses, families, and their intersections.

Publications are continuing beyond the 2020 conclusion of the study and will be highlighted here.

Our thanks go 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, 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