Managing chronic hepatitis B: A qualitative study exploring the perspectives of people living with chronic hepatitis B in Australia

Hepatitis B is a blood-borne and sexually transmitted viral infection. More than 2 billion people globally have been exposed to hepatitis B with an estimated 350 million people being chronically infected. Hepatitis B is the cause of up to 1.2 million deaths per year worldwide [1].

Epidemiological studies estimate chronic hepatitis B (CHB) prevalence in Australia to range between 0.5 and 2.1 percent [2–4] with the differences related to indirect estimates and updated migration data. Most people with chronic hepatitis B in Australia were born in highly endemic countries in the Asia-Pacific region [3, 5]. Despite improvements in clinical management, it has been estimated that only a small proportion of people with CHB, for whom treatment is recommended, receive antiviral therapy [3, 6]. This is resulting in an estimated two to three fold increase in hepatitis B-related liver cancer cases, with the numbers of people dying as a result of CHB in Australia estimated to increase from 450 in 2008 to 1,550 in 2017 [7, 8].

Previous health responses to hepatitis B in Australia have relied on vaccination, securing the blood supply and access to pharmaceutical treatments. This approach is inadequate in responding to the increasing burden of hepatitis B infection. The recent development of the National Hepatitis B Strategy 2010-2013 [9] with its goals of reducing the transmission, morbidity and mortality caused by hepatitis B, and to minimise the personal and social impact of hepatitis B provides the framework for implementing this response.

A significant gap in implementing this strategy is identifying how people with CHB respond to their infection. This study aimed to record this information by interviewing people with CHB and other stakeholders. The reported findings are one component of an extended qualitative research project aimed at developing a comprehensive public health response to hepatitis B in Australia.

This qualitative study used interviews and focus group discussions given the absence of non-statistical research on people with CHB in Australia.

Face-to-face semi-structured interviews were carried out with 20 people with CHB from Victoria, New South Wales (NSW) and South Australia. Participants were recruited through a public hospital liver clinic in Victoria; non-government organisations including the Hepatitis C Council of South Australia; Hepatitis NSW; the Hepatitis Council of Queensland, and through the professional networks of three investigators who had been involved in national responses to other blood borne viruses.

Participants included 13 men and seven women with ages ranging from late teens to mid 60 s. Six participants were born in Vietnam; five in China, three in Cambodia and two from Afghanistan. Other participants were from Australia, North America, Greece, and Turkey. The majority of participants had been diagnosed in Australia within the previous 10 years with one person diagnosed six weeks prior to the interview and two participants diagnosed for 20 years. Purposive sampling ensured variability in age, gender, ethnicity, state of residence, and exposure route.

One researcher conducted all interviews, guided by a pilot tested interview schedule. The schedule sought information on how people were diagnosed; their clinical management experience, and their perspective on the effect on their lives of having hepatitis B. All but one interview was conducted in English with interpreters available if required.

Four focus group discussions were held in Victoria, NSW, South Australia and Queensland with staff and volunteers of non-government organisations providing health and social support services to the communities most at risk of CHB infection. Forty community or health workers working with 12 different culturally and linguistically diverse background (CALD) communities provided an understanding of the broader social context for individuals with CHB, and of the impact of hepatitis B at an individual, community and health service level. Focus group participants were recruited through the Ethnic Communities Council of Queensland, Multicultural HIV/AIDS and Hepatitis C Service in NSW, the Hepatitis C Council of South Australia and the Australian Research Centre in Sex, Health and Society in Victoria. The focus group discussion schedule, informed by the outcomes from interviews with individuals, sought information about community wide responses to hepatitis B; perspectives of the needs of people with CHB, and how these needs could be addressed; the importance of hepatitis B within communities, and the priority of hepatitis B to the communities most at risk. Focus group discussions took between 60 and 90 minutes.

All interviews and focus groups were recorded, transcribed, and verified. Data from the transcripts were coded using Nvivo8 (QSR International Pty Ltd, VIC, Australia). Analysis was conducted using grounded theory by organising data into codes from which main themes were identified as interviews progressed [10]. Two researchers independently analysed and discussed results to reach consensus. Focus group and interview data were compared, ensuring data and methodological triangulation. Saturation was reached by the end of interviews and focus group discussions.

The proposal was approved by the La Trobe University Human Research Ethics Committee and the Southern Health Human Research Ethics Committee (Victoria).

Major issues identified through the interviews and focus group discussion included testing and diagnosing of CHB; disclosure; clinical management, and participants' beliefs and concerns about chronic hepatitis B infection. All quotations are from people with CHB except where otherwise indicated.

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)

This study provides insight into the understandings and responses to CHB infection by individuals with CHB. The study found that most participants had not consented to testing and received little or no information at diagnosis; people with CHB had a poor understanding of their infection, and had reservations in the capacity of health professionals to respond effectively to CHB.

For most of our participants, testing for CHB infection occurred without the explicit informed consent of the patient, and the CHB diagnosis occurred without either written or verbal information being provided to assist the patient understand the social implications or clinical impact of the infection. National hepatitis C and HIV testing policies have been developed in Australia for health care workers including general practitioners (GPs) that detail best practice in testing and diagnosis, both of which are described as: 'essential for a patient to make an informed decision regarding ... testing' [11]. Both the HIV and hepatitis C testing policies specify pre-test and post-test discussion processes including ensuring that the patient provides consent for the test, that the patient is provided with information about the social and clinical implications of diagnosis, including information about the condition being tested for, clinical management options, and health promotion information. While a testing protocol for hepatitis B has been identified [5], its development and implementation has not yet received national recognition or endorsement. Evidence based counselling guidelines would provide a framework for ensuring that people with hepatitis B understand the disease and prognosis and are able to appropriately respond to their infection [12].

The majority of people with CHB in Australia come from CALD backgrounds, primarily from the Asia Pacific region, and it has been previously reported that these populations have inadequate levels of awareness and knowledge about hepatitis B (13-15). The qualitative methodology used in this study supported the findings of these studies and provided a more nuanced perspective on the confusion about relationships between hepatitis viruses, and hepatitis viruses and HIV, treatment and transmission risks.

Chronic hepatitis B is a complex condition mostly affecting people who may have understandings of the body that differ from those of the western medical model. Providing information to people with CHB describing the implications of infection requires a comprehensive understanding of the virus, and the skills to be able to impart this information in a clear manner. People with CHB expressed a lack of confidence in the professional knowledge of service providers. General practitioners and other primary health care professionals need to be equipped with the information, expertise and motivation to ensure that people with CHB understand the natural history of the virus, the rationale for clinical monitoring and the available treatments. The term 'carrier' with an assumed meaning of chronic hepatitis B being inactive is not supported by current clinical management and yet was misunderstood by participants as an encouraging sign. The lack of relevant information provided to, or recalled by people with CHB about their infection provided opportunities for people to seek explanations of their infection that were culturally relevant, although not necessarily accurate. Our findings show that understandings of hepatitis B may be influenced by cultural background, and that culturally and linguistically appropriate interventions are required to improve knowledge and assist in providing higher standards of care [16, 17].

Australian public health responses to HIV and hepatitis C acknowledge the role of stigma and discrimination as a result of transmission occurring through sex or injecting drug use in the majority of infections [18, 19]. Some participants in our study reported selective disclosure of their infection to other people. Despite particular cultural beliefs among some CALD communities about illness or blood borne viruses, we found less evident stigma related to hepatitis B than for hepatitis C and HIV [20], particularly given the familial nature of infection for many of our participants. This is an area in which further research is required.

Given sampling limitations, these findings have limited generalisability; nonetheless, as the first qualitative study exploring the perspective of people with CHB in Australia, this study provided information for the development of a public health response to hepatitis B. In addition, the qualitative data describing hepatitis B knowledge, beliefs, and behaviours of people with CHB can be used to develop population-based surveys. Such surveys could quantify the knowledge and attitudes of people with CHB and be used to develop culturally appropriate community-based interventions.

English language proficiency was identified as the main barrier in communicating between health care providers about CHB in a study of Asian-Americans [21]. This barrier was not directly addressed in our study where most interviews were held in English and participants had at least minimal English proficiency.

GPs were not specifically targeted for interview in this study. Qualitative research describing GPs knowledge and practice in response to CHB is a priority to identify their perspective on barriers to effective CHB management.

In conclusion, this study was the first in Australia and one of the few internationally [12, 22], to provide qualitative data describing how people with CHB respond to their infection. This information included identifying significant gaps in culturally and linguistically appropriate information and education, particularly at the point of diagnosis. This provision of information will assist in improving the knowledge and understanding of people with CHB about their infection, and assist them in effectively managing this infection. Primary health care professionals, including GPs need the knowledge, resources, expertise and skills to provide relevant and accurate information to people with CHB. The role of stigma and discrimination, a key topic in Australian national responses to other blood borne viruses such as hepatitis C and HIV, needs further investigation to determine the extent and impact of these issues on people with CHB. The study provided data that informed the development of Australia's first National Hepatitis B Strategy.