Our Rohingyan community leader sits with us in Springvale Community Centre, Melbourne, Australia, educating us on what he perceives as the major risks for the transmission of hepatitis B virus in Myanmar. He reports that Burmese people love to drink Red Bull, Coca Cola, and tinned juice. However, in Myanmar these canned drinks are kept on store shelves for a long time. Here, he says, is the risk. Drinking the expired tinned drinks and the exposure to “gas” is how hepatitis B is acquired.
“But we have a remedy,” he reports, proceeding to explain the traditional cure; something he believes can be used to treat all problems of the liver. “They make a cone from newspaper and place the cone over the navel. Then they paint the cone with oil and turmeric, and burn it from the top. As the fire burns, the yellow from the turmeric absorbs the yellow from the jaundiced skin.”
This is a new concept for us; us being a specialist hepatologist, liver specialist nurse, and public health project manager. We are conducting this interview as part of the Be Positive project. Our aim is to increase patient initiated screening for hepatitis B in at risk migrant populations and we have chosen to collaborate with the Rohingyans, Afghans, and South Sudanese communities in South East Melbourne.
Monash Health is the second largest health service in Australia and serves the largest population of people from culturally and linguistically diverse (CALD) backgrounds in Victoria. Our catchment area generates one of the highest notification rates for new cases of chronic hepatitis B (CHB) in Australia. We developed a programme that trained patients with CHB from these three communities who attend our liver clinics to tell their own story about hepatitis B through the SBS radio service and other forums directly to their community.
Australia continues to see a large influx of refugees from many hepatitis B Virus (HBV) endemic regions and migrant demographics are continually evolving to reflect the global political climate. It is therefore important to investigate what other stories about CHB might exist among these new migrant populations and not to extrapolate research findings from other communities. It is also vital that we step back as health professionals and be aware of our own assumptions about how a community may perceive HBV—and to question whether or not stigma represents a genuine barrier to healthcare engagement.
In the case of the Rohingyans, a lack of education on and awareness of hepatitis B meant there was little understanding of the transmission of HBV, and thus for most they didn’t have enough of a context of the virus for stigma to occur.
Rohingyans do not have a written language, which makes it a challenge to adopt innovative health promotion activities for this population. The Afghani, Sudanese, and Rohingyans represent new communities to Australia, and it is essential we acknowledge that the healthcare barriers they face may be different from those of more established communities, such as the Chinese, Vietnamese, and Cambodians.
So what other potential paradigms or cultural motifs are healthcare providers faced with when engaging with these newly arrived refugee communities? Firstly, it was important for us to understand the wider context and competing priorities held by these communities, such as looking for housing, reuniting with their family in Australia, and learning English. With an asymptomatic infection such as CHB, it is easy to delay seeking testing and vaccination—especially if one has never heard of hepatitis B.
Previous experiences (or lack thereof) of healthcare in home countries, such as Afghanistan or Sudan, can also lead to difficulty navigating the Australian system with its multiple entry points and hierarchy. Other obstacles include language and literacy barriers, low levels of health related and general education, and entrenched social hierarchies; however, these issues are not exclusive to health promotion in CHB.
The major insight generated from this project was the lack of an existing story for hepatitis B within these new migrant communities, and the opportunities and limitations this imposed. There was a wide spectrum of understanding in each group we worked with, and as a result varying levels of attitudes and stigma existed. The question we then had to ask ourselves was “what is the role of health education if there’s no universal health story?” This was answered by our patient community leaders and their audience.
By engaging with our patients with CHB from the Rohingya, Afghan, and Sudanese populations we were able to interact with their communities in an authentic and culturally relevant way; which meant more effective message delivery in a comfortable environment. We were able to use existing community networks and cultural customs for them to create their own story, in their own language, and within their own paradigms.
This approach was associated with successes and failures, including a community forum where no South Sudanese participated. We speculate that the lack of engagement from this specific community could be due to multiple factors, including poor grasp of the severity of CHB, lack of interest, or distrust of our project. Africans are statistically more likely to develop liver cancer at an earlier age, and so surveillance for hepatocellular carcinoma is conducted as early as 20 years of age in this population—which demonstrates the urgent need for innovative health promotion activity to be targeted at this group.
If we are to successfully engage with and promote self-advocacy among these high risk populations, we must enquire with an open mind and acknowledge the social obstacles that are present for them. Community engagement in health promotion is a long term and evolving process that requires immense trust building, and we as healthcare professionals should conscientiously provide environments that are conducive to identifying and disarming these barriers.
After our Rohingya forum, a community member who had been referred to our clinic told us that he had relayed his newly acquired knowledge about CHB to his family back in Burma, “It’s safe to drink Coca Cola.”
Katherine Sievert, project director, Monash Health, Clayton, Victoria.
Suong Le, specialist hepatologist consultant, Monash Health.
Paul O’Neill, liver specialist nurse, Monash Health.
Competing interests: None declared.