Professional perspectives on serodiscordant family service provision in the context of blood-borne viruses

ABSTRACT

In recognition of the broader relational aspects of viral infections, family support is considered important when someone is diagnosed with a blood-borne virus (BBV), such as HIV, hepatitis C (HCV) and hepatitis B (HBV). However, families’ own support needs are often not a priority in service provision within the BBV sector. In this article, we draw on qualitative interviews with 20 key informants working in various professional capacities in health, social policy, care and advocacy sectors in Australia, and explore their experiences and perspectives on family inclusivity in their services. Overall, key informants acknowledged the diversity of what constitutes family, and consistently viewed family engagement as beneficial to both diagnosed individuals and the wider familial networks affected by a diagnosis. However, prioritising individual care in support services presented barriers to engaging families, which are further complicated by the role of stigma in shaping the social realities of living with a BBV. Increasing understanding in service provision settings that serodiscordance can be a family experience has the potential to widen this analytic lens to consider the support needs of families in their own right.

KEYWORDS:

• HIV
• hepatitis B
• hepatitis C
• family
• care and support
• service provision
• serodiscordance

Acknowledgements

Many thanks to all of the individuals with lived experience, their families and stakeholders, who generously shared their time and stories with us. Thanks also 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; and The Albion Centre. Research support and other key contributions were also provided by Dr Jessica Botfield, Dr Jake Rance, Dr Lise Lafferty and Dr Jialiang Cui.

Ethical approval was provided by the Sydney Local Health District (RPAH Zone) Human Research Ethics Committee (16/RPAH/513), the ACON Research Ethics Review Committee (2016/21) and the Aboriginal Health and Medical Research Council of NSW Ethics Committee (1213/16). Site-specific ethics approvals were provided by the Sydney Local Health District (RPAH Zone) Research Governance Office, the South East Sydney Local Health District Research Governance Office, the Illawarra Shoalhaven Local Health District Research Governance Office, and the Sydney Children's Hospital Network Ethics Committee.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was supported under Australian Research Council's Discovery Project funding scheme (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. All of these research groups receive funding from a range of external agencies.