Understanding how to live with hepatitis B: A qualitative investigation of peer advice for Chinese people living with hepatitis B in Australia.

Most people with hepatitis B in Australia were born in China, where the infection has an intergenerational impact with significant social implications. Understanding how people of Chinese ethnicity with hepatitis B understand and respond to hepatitis B could help reduce morbidity, mortality, and the personal and social impact of the infection. My Mandarin speaking colleague from the Burnet Institute and I interviewed 30 people with hepatitis B of Chinese ethnicity that we recruited from a liver clinic to find out what advice people with hepatitis B was important for people who had been newly diagnosed.

While participants had access to the most recent and accurate information about hepatitis B as a biomedical condition, many of them had different understandings of how they were infected or how they understood hepatitis B. One person described hepatitis B as a progression of unrelated health conditions:

Rheumatoid arthritis, then it became an immune system disorder, and then it became … getting hepatitis C and hepatitis B, like this (Interview 21).

Five key messages people thought were important to tell a newly diagnosed person were to form sustainable clinical relationships, make dietary changes, develop emotional resilience, regulate energy, and issues related to disclosure.

  1. Maintain a relationship with clinical services.

The most common advice for people newly diagnosed with hepatitis B was to establish a relationship with a medical professional and to be regularly clinically monitored:

Professional advice is the most important thing (Interview 2).

If you take this medicine, don’t forget to take it… don’t go fishing for three days and dry the nets for two (Interview 18).

  1. Diet

While not supported by medical advice, food consumption was an important health promotion message. Various suggestions for maintaining a good diet including balanced eating including “cool vegetables”, and consuming “light” food - food that was not oily, spicy or strongly flavoured:

The general rule is that most of the times disease goes in by the mouth, (and you need to) eat more food that cools your body or similar, …to clean up the hot things inside (your body) (Interview 12).

  1. Regulate energy level

A key feature of the advice, and one with a significant economic and psychological impact on people with hepatitis B and their families, was that resting or reducing work could protect their health. One person thought conserving energy affected the virus.

Sometime probably tired, there will be like, the virus will be like up a little bit and you know, sometimes you relaxing more and then they will be like down (Interview 15).

  1. Resilience

One key theme for people who have been newly diagnosed relates to the need for developing psychological resilience with support being necessary, particularly with a lifelong infection:

You have to be prepared for this idea, this disease may accompany you for a lifetime, it will have some impact on you … it had a big impact on me. If you let me make a suggestion …to have a psychological counselling (Interview 10).

  1. Disclosure

A broad range of responses were received about disclosure. Several people described that as hepatitis B was not casually transmitted, or that the person with hepatitis B was on treatment and therefore had little viral load, there was no need for them to disclose their infection to people outside of their family:

I don’t think it’s necessary to tell others because the doctor also told us that if you take this medicine, you will not transmit (the virus) to others, so there is no need to tell others (Interview 25).

There were significant differences in terms of privacy and the broad impact that hepatitis B has in China in comparison to Australia:

People treat this as individual privacy, which is different from what’s in China, you have to do the test whenever you have to enter a school or work, and everyone knows (Interview 2).

While most participants were clear in their advice to limit disclosure, two participants, both born in Malaysia, had no reservations in disclosing their hepatitis B infection:

I’m very open about it to be honest … I just don’t feel like it should be something I need to hide (Interview 13)

The study highlights conflicts between biomedical and public health explanations and the lived experience of hepatitis B among people of Chinese ethnicity in Australia. Beliefs about hepatitis B are embedded within cultural understandings of health that can conflict with bio-medical explanations of the infection. Acknowledging these perspectives provides for insightful communication between health services and their clients, and the development of nuanced models of care informed by the experience of people with hepatitis B.

Acknowledgements: Many thanks to all study participants and their families who generously shared their time and stories with us, and to the doctors, nurses, receptionists, and interpreters within the liver clinics at St Vincent’s Hospital (Melbourne) who supported our study.

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