Troubling complaint: Addressing hepatitis C‐related stigma and discrimination through complaint mechanisms

Author:

Lenton Emily1ORCID,Kagan Dion2ORCID,Seear Kate1ORCID,Mulcahy Sean1ORCID,Farrugia Adrian1ORCID,valentine kylie3ORCID,Edwards Michael4,Jeffcote Danny5

Affiliation:

1. Australian Research Centre in Sex, Health and Society La Trobe University Bundoora Victoria Australia

2. Health+Law University of New South Wales Sydney New South Wales Australia

3. Social Policy Research Centre University of New South Wales Sydney New South Wales Australia

4. Faculty of Addiction Psychiatry Royal Australian and New Zealand College of Psychiatrists Melbourne Victoria Australia

5. cohealth Melbourne Victoria Australia

Abstract

AbstractThe need to grapple with hepatitis C‐related stigma and discrimination in Australian health‐care settings has been recognised in public policy, and work is underway to address it. But how likely are people to raise a complaint when they experience stigma or discrimination? And how effective and accessible are complaints mechanisms? Given complaint procedures are considered important parts of the delivery of safe and ethical health care, these are important questions that have yet to be substantially explored. Drawing on interviews with people with lived experience of hepatitis C (n = 30), this article considers how affected people feel about complaints processes and the act of complaining. Alongside these perspectives, we discuss complaint mechanisms, and the views of stakeholders who work with hepatitis C‐affected communities in policy, health, legal and advocacy roles (n = 30) on the institutional and cultural dynamics of complaint. We draw on Sara Ahmed’s Complaint! and Fraser et al.’s work on drug‐related stigma to analyse these concerns that have yet to be researched, and argue that the (unlikely) prospect of successful complaint is a key part of the network of forces that perpetuate stigma, discrimination and disadvantage among people who have (lived with) hepatitis C. Although people with lived experience are often powerful advocates and acutely aware of the deficiencies in the quality of their treatment, our interviews suggest that the obstacles they face to accessing health care are seen as commonplace, intractable and insurmountable; and, that mechanisms for addressing them—where they exist at all—treat complaints in narrowly individualising terms and expose complainants to dismissal. Following Ahmed, we call for a ‘troubling’ of complaints—responding to them not as individual problems but rather as collective, structural concerns, necessitating new approaches.

Funder

Australian Research Council

Publisher

Wiley

Reference45 articles.

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3. AIVL. (2017).Stigma and discrimination as barriers to health service access for people who use drugs. Retrieved April 2021 fromhttps://removingbarriers.ashm.org.au/wp‐content/uploads/2017/05/ASHM‐project‐AIVL‐Stigma‐submission.pdf

4. Anti‐Discrimination Board of New South Wales. (2001).C‐Change: Report of the enquiry into hepatitis C related discrimination.Anti‐discrimination Board of NSW a division of The Attorney General's Department of NSW.

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