Knowing and telling: how African-Australians living with chronic hepatitis B understand hepatocellular carcinoma risk and surveillance

Abstract

African-Australians have a high prevalence of chronic hepatitis B (CHB) and an increased risk of liver cancer (hepatocellular carcinoma, HCC) at a younger age than other affected groups living with CHB. The prevention of HCC-related mortality is possible with timely diagnosis of CHB, regular monitoring including liver cancer surveillance and appropriate treatment with antiviral therapy. Currently, little is known about how African-Australians living with CHB understand their condition, their risk of liver cancer and the need for regular monitoring. There were 19 semi-structured interviews conducted with African-Australians who have CHB. The interviews explored the participants’ knowledge of CHB, their perceptions of future health risks and experiences and understanding of healthcare. The three major themes identified in the analysis were (i) the risks to physical health including liver cancer, (ii) risks to social and emotional wellbeing from diagnosis and disclosure and (iii) the fear and worry associated with being infectious. The understanding of risk and mitigation of that risk was framed by their understanding of health, ageing, as well as participants’ educational background and faith. Our findings show the importance of engagement with the broader social and emotional effects of CHB by clinicians and services, and can assist in developing interventions to increase participation in healthcare, including liver cancer surveillance.