My health, our family

Documenting stories of family life in the context of HIV, hepatitis B or hepatitis C

Current project

The clinical management of blood-borne viruses has gone through rapid changes in recent years. Despite biomedical advances which have reduced risk of transmission to others, social stigma remains a persistent issue for people living with HIV, hepatitis B and C.

Families in which there is serodiscordance (eg. mixed infection status) play a critical role in supporting those who have been diagnosed, responding to both the health and social implications of these infections. But we have seen little recognition of their experiences and identification of the support needs of these families.

Throughout this period of biomedical transformation, the forms and meanings of ‘family’ have also been undergoing change, as have the forms through which families provide care and support to loved ones who are facing challenges regarding their health. Yet, few studies have brought together an interest in the sociology of family life into the changing landscape of blood-borne virus prevention and care.

Researchers at the Centre for Social Research in Health, in collaboration with the Social Policy Research Centre  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 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 infections 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 (hepatitis B, hepatitis C, or HIV) (‘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

Persson, A; Smith, A; Wallace, J; valentine, k; Bryant, J; Hamilton, M, Newman, C. (2020) Understanding “risk” in families living with mixed blood-borne viral infection status: The doing and undoing of “difference”. Published online in in Health on 1 August 2020. https://doi.org/10.1177/1363459320946469

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

valentine, k., Persson, A., Newman, C., Hamilton, M., Bryant, J., Wallace, J. (2020) Experience as evidence: the prospects for biographical narratives in drug policy. Published online in Contemporary Drug Problems on 10 April 2020. https://doi.org/10.1177/0091450920916244

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. Published online in Social Science & Medicine on 22 October 2019. https://doi.org/10.1016/j.socscimed.2019.112620 [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. Published online in Sexuality and Culture on 5 July 2018. https://doi.org/10.1007/s12119-018-9542-2

Newman, C. (2018) Queer families: valuing stories of adversity, diversity and belonging. Published online in Culture, Health and Sexuality on 31 May 2018. https://doi.org/10.1080/13691058.2018.1468032 [OPEN ACCESS]

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]

Hamilton, Myra and Newman, Christy (26 March 2020) The heartbreaking prospect of asking grandparents to stay away. Women’s Agenda. https://womensagenda.com.au/latest/the-heartbreaking-prospect-of-asking-grandparents-to-stay-away/

Newman, C. (22 February 2018)) Queer families: Documenting stories of adversity, diversity and belonging. 2018 CSRH Sex(uality) Lecture, Part of the 2018 Sydney Gay and Lesbian Mardi Gras Festival. https://www.youtube.com/watch?v=PCPeEsTv3bU&feature=youtu.be

Podcast on ‘families’ for International Day Against Homophobia and Transphobia. Sydney Sexual Health Centre. Host: Heather McCormack. https://soundcloud.com/sydneyshc/episode-1-my-health-our-family

Australian Research Council (DP160100134)

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