Logics of control and self-management in narratives of people living with HIV, hepatitis C and hepatitis B

Abstract

In Australia, the response to HIV, hepatitis C and hepatitis B has largely been through the constructed category of ‘blood borne viruses’ which treats these viruses as an interconnected set of conditions with respect to their mode of transmission. In this paper, we explore how people understand their viral infection, and compare the logics underpinning these different understandings. In-depth interviews were conducted with 61 participants who were either living with a blood borne virus or were the family members of people living with them. Our analysis reveals that the viral infection was often described as ‘just a condition that needs to be managed’, albeit in potentially exhausting ways. This understanding hinged upon a biomedical logic in which viral invasion was seen as causing illness and in turn necessitating biomedical intervention. In contrast, some participants with hepatitis B presented their infection as a condition unintelligible through Western biomedical logics, defined instead by symptomology – in terms of ‘liver disease’, and/or ‘liver inflammation’. This focus on symptomology calls into question the soundness of prevention and management responses to hepatitis B based in biomedical logics and reveals the extent to which living with a virus involves multiple, sometimes incompatible, cultural logics. The different logics underpinning HIV, hepatitis C and hepatitis B reveal shortcomings of framing these viruses together as a coherent single construct.

Keywords:

• HIV
• hepatitis C
• hepatitis B
• beliefs
• biomedical logic

Acknowledgements

Thanks go to the individuals with lived experience, their families, and stakeholders who generously shared their time and stories with us. Thanks also go to the members of the project Advisory Committee, and the 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 support and other key contributions were also provided by Jessica Botfield, Jake Rance, Lise Lafferty and Jialing Cui.

Disclosure statement

The authors do not report any conflicts of interest.

Data availability

Research data are not shared.

Additional information

Funding

This research was supported by an Australian Research Council Discovery Project under grant DP160100134. The views expressed herein are those of the authors and are not necessarily those of the Australian Research Council. The contributions of the investigator team were supported by the Centre for Social Research in Health and the Social Policy Research Centre at UNSW Sydney, both of which receive some support from UNSW Arts and Social Sciences, and by the Australian Research Centre in Sex, Health and Society and The Burnet Institute. Each of these research groups receives funding from a range of external agencies.