Centre for Social Research in Health
My health, our family
Critical perspectives on serodiscordance in family life
Published on the 28 March 2024
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
Research Centre
Research Area
HIV and Sexual Health | Chronic Health Conditions | Hepatitis and Harm Reduction
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Newman, C. E., Persson, A., valentine, k., Hamilton, M., Bryant, J., Wallace, J., Drysdale, K., Smith, A. K. J., Gray, R., Lafferty, L., Botfield, J., Rance, J., & Cui, J. (2020). my health, our family: documenting stories of family life in the context of HIV, hepatitis B or hepatitis C (summary report). Sydney: UNSW Centre for Social Research in Health. 2 December 2020. http://doi.org/10.26190/5facbe6ba9ac8
Bryant J, Smith AJ, Persson A, valentine k, Drysdale K, Wallace J, Hamilton M, Newman C.E. (2023) Logics of control and self-management in narratives of people living with HIV, hepatitis C and hepatitis B. Culture, Health & Sexuality, 25(9): 1214-1229. https://doi.org/10.1080/13691058.2022.2149858
valentine, k., Smith, AKJ, Persson, A., Gray, R, Bryant, J, Hamilton, M., Wallace, J., Drysdale, K., Newman, C.E. (2023) The freighted social histories of HIV and hepatitis C: Exploring service providers’ perspectives on stigma in the current epidemics. Medical Humanities, 49(1): 48-54. https://doi.org/10.1136/medhum-2022-012382
Drysdale, K., Persson, A., Smith, A.K.J., Wallace, J., valentine, k., Gray, R.M., Bryant, J., Hamilton, M., Newman, C.E. (2022) Professional perspectives on serodiscordant family service provision in the context of blood-borne viruses. Health Sociology Review, 32:2, 145-160. http://doi.org/10.1080/14461242.2022.2110922
Persson, A; Smith, A; Wallace, J; valentine, k; Bryant, J; Hamilton, M, Newman, C. (2022) Understanding “risk” in families living with mixed blood-borne viral infection status: The doing and undoing of “difference”. Health, 26(3), 284-301. https://doi.org/10.1177/1363459320946469
Smith, A., Persson, A. Drysdale, K., Bryant, J, valentine, k., Wallace, J., Hamilton, M., Gray, R., Newman, C.E., (2021) Family imaginaries in the disclosure of a blood-borne virus. Sociology of Health and Illness, 43(6): 1422-1435. https://doi.org/10.1111/1467-9566.13316
Drysdale, K., Newman, C.E., Persson, A., Gray, R.M. (2020) Mapping experiences of serodiscordance: using visual methodologies to construct relationality in families living with or affected by stigmatised infectious disease. Qualitative Health Research, 30(5): 793-808. https://doi.org/10.1177/1049732319890304 [OPEN ACCESS]
valentine, k., Persson, A., Newman, C., Hamilton, M., Bryant, J., Wallace, J. (2020) Experience as evidence: the prospects for biographical narratives in drug policy. Contemporary Drug Problems, 43(3): 191–209. https://doi.org/10.1177/0091450920916244 [OPEN ACCESS]
Persson, A., Newman, C.E., valentine, k., Hamilton, M., Bryant, J. & Wallace, J. (2019) The embodied relationality of blood-borne viruses: How families matter in the context of a stigmatised viral infection. Social Science & Medicine, 243: 112620. https://doi.org/10.1016/j.socscimed.2019.112620 [OPEN ACCESS]
Newman, C. (2019) Queer families: valuing stories of adversity, diversity and belonging. Culture, Health and Sexuality, 21 (3): 352-359. https://doi.org/10.1080/13691058.2018.1468032 [OPEN ACCESS]
Hamilton, M., Botfield, J., Persson, A., Newman, C.E., Bryant, J., valentine, k., Wallace, J. (2018) Hidden carers? A scoping review of the needs of carers of people with HIV in the contemporary treatment era. International Journal of Carers and Caring, 2(4): 529-549. https://doi.org/10.1332/239788218X15411705099442
Newman, C.E., Persson, A, Ellard, J. (2018) When HIV figures in family life: exploring the relational reach of serodiscordance. Sexuality and Culture, 22(4): 1527-41. https://doi.org/10.1007/s12119-018-9542-2
Persson, A., Newman, C., Hamilton, M., Bryant, J., Wallace, J., valentine, k. (2017) Families living with blood-borne viruses: the case for extending the concept of “serodiscordance”. Interdisciplinary Perspectives on Infectious Diseases. Volume 2017, Article ID 4352783, 10 pages. https://doi.org/10.1155/2017/4352783 [OPEN ACCESS]
Australian Research Council (DP160100134)
