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The freighted social histories of HIV and hepatitis C: exploring service providers’ perspectives on stigma in the current epidemics
  1. kylie valentine1,
  2. Anthony Smith2,
  3. Asha Persson2,
  4. Rebecca Gray2,
  5. Joanne Bryant2,
  6. Myra Hamilton3,
  7. Jack Wallace4,
  8. Kerryn Drysdale2,
  9. Christy E Newman2
  1. 1Social Policy Research Centre, University of New South Wales, Sydney, New South Wales, Australia
  2. 2Centre for Social Research in Health, University of New South Wales, Sydney, New South Wales, Australia
  3. 3Work and Organisational Studies, University of Sydney Business School, The University of Sydney, Sydney, New South Wales, Australia
  4. 4Burnet Institute, Melbourne, Victoria, Australia
  1. Correspondence to Dr kylie valentine, UNSW, University of New South Wales, Sydney, NSW 2052, Australia; k.valentine{at}unsw.edu.au

Abstract

A virus has a social history. In the case of the hepatitis C virus (HCV) and HIV, this history is one involving stigma and discrimination, advocacy and activism, and recent dramatic improvements in treatment. These social histories influence the experience of people who live with the viruses, and those who work with them. One aspect of this is the impact of social changes on the biographical disruption and integration brought about by illness. Healthcare practitioners who see significant improvements in the effectiveness of treatment for a condition over the course of their professional life will incorporate those changes into their own history and their relationship to that condition.

This article is based on a study of the experiences of serodiscordance, or mixed infection status, in families living with HIV and two types of viral hepatitis, hepatitis B and hepatitis C. The article explores the perspectives of healthcare workers who work with people affected by these viruses, who were asked about their experiences in working with serodiscordance in families. Interviews revealed that changing social meanings given to bloodborne viruses, and changes to treatment over time, held a significant place in the accounts that service providers gave of their work. In asking them to describe their work with HIV and HCV, we were also asking about work that has been shaped by changing patterns and sources of stigma, and recently reshaped by changes in treatment and outcomes. While typically the experiences of patients and their families are used to investigate the social histories of diagnosis and stigma, the professional perspectives and life stories of the service providers who work with them are also revealing. We heard accounts in which histories as well as current regimes were prominent, illuminated further by insights from the sociology of health on narrative and biographical disruption.

  • Social science
  • Infectious diseases
  • cultural history

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Footnotes

  • Twitter @anthonykjsmith

  • Contributors All authors contributed to conceptualisation, analysis, and writing. CN is lead CI on the project. Analysis and writing on this paper were led by KV who is guarantor of this publication.

  • Funding This research was supported under Australian Research Council’s Discovery Project funding scheme (DP160100134). The views expressed here 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.

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

  • Provenance and peer review Not commissioned; externally peer reviewed.