A dirty little secret: stigma, shame and hepatitis C in the health setting

Abstract

While recent medical innovation shows great promise in treating hepatitis C (HCV), it remains a condition associated with profound stigma. HCV is a bloodborne virus (BBV) most commonly transmitted in high-income countries by injecting drug use, and it is the stigmatising association between the two which is deeply problematic for those with HCV. A qualitative study undertaken in 2002 found that disclosure in health settings places those with HCV in positions of pronounced vulnerability. Disclosure is a primal scene, an interface, where the stigma of HCV, replete with connotations of disease and deviance, potentially transforms those affected into shamed subjects. Standard precautions protect health workers and minimise the transmission of contagion, measures which, in theory, also mitigate the requirement of those with BBVs to unnecessarily disclose their blood status. However, questions on pre-employment health checks, concerns that health treatments might adversely affect the liver and an ethical need to pre-emptively inform healthcare professionals undertaking exposure prone procedures are occasions when those with HCV confront the decision to disclose their blood status. This paper employs Goffman's model of actual and virtual social identities, along with Douglas' notion of dirt and pollution, to examine the dilemmas around disclosure those with HCV negotiate within the health setting. Discriminatory responses by healthcare professionals elucidate the stigmatising potential HCV carries. The subsequent reticence by those with HCV to disclose their blood status risks less than optimum healthcare. Recent studies indicate that stigma occurring in health settings remains a perennial concern for those with HCV.

Screening Adult Children of Hepatitis C–Infected Baby Boomers: Barriers to Testing and Prevalence Estimates

“…Prior studies evaluating stigma and knowledge about HCV have not focused on HCV‐infected women 8‐13 . We found that HCV‐infected baby boomer women did not demonstrate a strong grasp of HCV, despite being followed by a hepatology provider for years to decades.…”

The challenges of hepatitis C management in Iran: A qualitative study with patients

“…Studies show that patients are reluctant to continue to be treated because of fear of discrimination and harassment that others may have for them . In order to prevent the complications that stigma can have on the patients' mental conditions, it is necessary to have appropriate counseling, with health‐care decision and policy makers, the media, nongovernmental organizations (NGOs), schools, and universities, which play a major role in reducing such negative beliefs about HCV …”

Adolescent Hepatitis C: Prevalence, Impact, and Management Challenges

“… 28 Yet, HCV is still considered a stigmatizing condition 17 and patients often feel discriminated against, both in the health-caresetting and in their workplace. 29 …”