Stigma-sensitive practice in hepatitis C and HIV testing

In 2017, the Blood-Borne Virus Sector Development Program based at the Australian Research Centre in Sex, Health and Society (ARCSHS) conducted a consultation with forty Victorian health and community practitioners engaged with blood-borne virus testing. The consultation focused on identifying what constitutes best practice in pre- and post-testing discussion in the era of highly-effective treatments for HIV and hepatitis C, and in the context of Australia’s hepatitis C elimination targets for 2030.

Earlier in 2021, GLaD program researcher Emily Lenton led an article reporting on this work, titled ‘Upscaling HIV and hepatitis C testing in primary healthcare settings: Stigma-sensitive practice’ in the Australian Journal of Public Health. The article was co-authored with Jen Johnson, previously of the BBV Sector Development Program, and Dr Graham Brown. This article focuses on how healthcare settings can support the goal of upscaling HIV and hepatitis C testing in a way that delivers safe and stigma-free testing encounters.

Since the early 2000s, there has been global advocacy to normalise HIV testing. More recently, since the arrival of direct-acting antivirals for the treatment of hepatitis C, there has been an increasing push to ‘integrate’ models of care. In the case of hepatitis C, integrated models of care involve the bundling up of testing, diagnosis and treatment, ideally swiftly. These and other developments have meant a shift away from HIV and hepatitis C ‘exceptionalism’ to a model of ‘normalisation’. Normalisation refers to an approach in which testing is integrated into general preventative healthcare testing. It seeks to treat these viruses similarly to other diseases and conditions requiring early diagnosis, rather than as something that requires specialist skills.

The process of normalisation, however, has raised important questions for primary healthcare settings, including how they can support the goal of upscaling HIV and hepatitis C testing in a way that is safe and stigma-free, given the heavily stigmatised histories of both viruses. The participants in the consultation described a range of practices they consciously used to avoid reproducing stigma and to support the intention to normalise hepatitis C and HIV testing. Together, these practices constitute a specific approach that we called ‘stigma-sensitive practice’.

Stigma-sensitive practice requires clinicians to have a general understanding of the historical context of hepatitis C and HIV, a context that may often make testing a stressful experience. For example, one of the most important and useful questions to ask at the start of the discussion relates to a person’ testing history:

Have you been tested for HIV/hepatitis C before?

How was that for you?

These questions can be found in the Talking Testing Tools, guides developed from the consultation for practitioners delivering pre- and post- test discussion, to ensure consent is gained.

Stigma-sensitive practice is underpinned by the use of language that does not discriminate, define a person by their condition or come across as judgemental or punitive. The consultation also revealed that developing a rapport with a patient is just as essential as, and at times more important than, imparting medical advice and referral for further medical interventions. As the authors write:

Attending to the psychosocial aspects of what it means to be tested and diagnosed with HIV or hepatitis C was a strategy used to reduce the power imbalance between the clinician and patient, demonstrate empathy and acknowledge that receiving a positive test result, regardless of the availability of effective treatments, can significantly affect a person’s identity and well-being.

Participants in the consultation strongly emphasised the importance of patients being in control of the degree to which they disclose information about any transmission risks or practices. Provider-led questioning about risk practices, even if the providers are peers, can reproduce stigma and shame for patients, as well as create discomfort for test providers. If direct questions about risk practices are included in test discussions, it is important to use language that is inclusive of all genders and bodies, sexualities and relationship types.

The consultation and subsequent paper found that the pre- and post-test discussion remains an important feature of testing, however it is important that these encounters be adapted according to the setting, client’s testing history and other constraints such as time and space to hold these discussions. Informed consent remains an essential element of the testing discussion. Future work might explore the potential for unintended consequences of upscaling testing without attending to the historical and ongoing stigma experienced by people with hepatitis C and people who use drugs. Members of the GLaD team have explored some of these issues in separate work and you can read more about it here.

Citation: Lenton, E., Johnson, J. and Brown, G. (2021) ‘Upscaling HIV and hepatitis C testing in primary healthcare settings: Stigma-sensitive practice’, Australian Journal of Primary Health 27(4)