There was diversity among the participants' experiences in disclosing their infection to family and the broader community. The inter-generational nature of hepatitis B transmission for one young woman meant that there was no shame associated with infection, and that disclosing her hepatitis B status was straightforward.
I had nothing to hide because it was given to me from birth. (Australian born woman with Vietnamese parents, mid 20s)
However, disclosure was not easy for all people that we spoke with. Some respondents talked of complex rules about disclosure for different friends and family members in different situations. One man highlighted that shrewdness was required to determine to whom they would disclose their infection:
It's about being almost street-smart. (American born man, mid 40s)
One person had very clear rules about disclosure that reduced the risk of negative responses to their infection:
If they don't ask I'm not telling them. (Cambodian born man, late 30s)
However, the fear of rejection or stigma at a personal and community level was identified as an important issue that restricted individual disclosure:
I didn't let my brother know because he's only 10 ... I don't want him to ... go to school and tell anyone because kids are kids ... I don't want to change his life. (Chinese born woman, early 20s)
The impact of a CHB diagnosis and subsequent disclosure of this information within some communities was reported by a health worker to lead to exclusion from family and community life. Some community level responses highlighted established ways of dealing with vulnerability:
If you come from a different cultural background, the way you avoid disease is through exclusion, and so if that works with some things, then they [do the same with hepatitis] (Community Worker)
People are really fearful, so when one partner is diagnosed with hepatitis B ... the other partner is wanting to stay right away from them. (Community Worker)
Some of the health professionals noted less stigma related to hepatitis B particularly in comparison to other sexually transmitted diseases:
It's just called liver sickness ... hepatitis B is not seen as a sexually transmitted disease, because ... you don't get the genital symptoms, it doesn't have the stigma as syphilis. (Health Worker)
Perceptions of the availability, appropriateness and accuracy of information about hepatitis B for people with CHB and health professionals were key themes in participants' beliefs about good management for CHB.
Several people noted that their deficits in information had a significant effect on their behaviour which resulted in poorer health outcomes:
I thought it was only a weak sign so I didn't even bother about [treatment] ... so I didn't get regular blood tests or anything. (Chinese born man, early 20s)
If they told me a few years ago that I wasn't really meant to drink alcohol ... I would have cut down on it. (Cambodian born man, early 20s)
On the other hand, several participants reported effective health promoting responses such as reducing alcohol consumption:
After I found out I had hepatitis B, I quit drinking after they told me drinking could make it really worse for the liver .... It makes it better for life anyway. (Chinese born man, mid 20s)
Three people including, one who had been diagnosed in the past two years, noted that they weren't being treated for hepatitis B because: not yet ...just a carrier. (Vietnamese born man, late 20s)
In spite of Australia's policy of vaccinating all newly born children and providing vaccine and immunoglobulin to neonates born to hepatitis B infected mothers, missed opportunities for reducing transmission were noted by one respondent whose child was infected with hepatitis B at birth in Australia:
My daughter, she's only two and a half ... we just found out a year ago that she's got hepatitis B, she was born here. (Vietnamese born woman, mid 30s)
One participant, diagnosed six years previously, was concerned that his GP was unable to respond effectively to their need for information to help in self-monitoring:
I told the doctor that I had an e-antigen test, and he goes 'the result?' and I go 'I don't know, it's not active' or something and it was left there ... he hasn't followed [it] up. (Australian born man, late 20s)
One community worker noted the advice of their agency to people with CHB had changed over time, given the awareness of the agency in improvements in hepatitis B clinical management. They were concerned that GPs were not responding effectively to the needs of people with CHB:
If you've been diagnosed with chronic hepatitis B, ask your GP for a referral to a specialist ... I've noticed that GPs will sit on hepatitis B in their own room for years and years.
There were several instances when community and health workers disclosed their lack of knowledge about CHB:
Even the natural history - I'm not clear about it ... I don't even know if treatment is available (Community Worker)
Knowledge, beliefs and concerns
Given the nature of CHB infection, several participants reported other family members were infected and that this affected family relationships. Sometimes these familial links, along with a lack of understanding of hepatitis B, led to assumptions that challenged the view of hepatitis B as a virus:
The whole family have hep B except for my father ... maybe it's a blood thing. (Cambodian born man, late 30s).
Some people diagnosed with CHB in their country of origin, reflected on the endemic nature of hepatitis B in that country, and the lack of options available:
I got a test in Cambodia and the doctor told me I have hep B, but in Cambodia it's like normal, they don't care what happens. (Cambodian born man, late 30s)
Many participants associated hepatitis B with poor sanitation, reflecting an inadequate understanding of transmission risks:
I think I was infected in China, and we used to share foods, drinks, so I think that's how I got infected. (Chinese born man, early 20s)
A community worker working with people from CALD backgrounds who inject drugs noted a perspective indicating a relationship between hepatitis and HIV, with people progressing: from hepatitis A, to hepatitis B, and hepatitis C then to HIV.
This incorrect understanding of viral hepatitis was also noted by one man with CHB who understood hepatitis as:
Three levels - hepatitis A, hepatitis B and hepatitis C with hepatitis C being worse. (Afghani born man, mid 50s)