ORCID Profile
0000-0002-4738-7316
Current Organisations
Burnet Institute
,
University of New South Wales Centre for Social Research in Health
,
La Trobe University
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Research Topics
In Research Link Australia (RLA), "Research Topics" refer to ANZSRC FOR and SEO codes. These topics are either sourced from ANZSRC FOR and SEO codes listed in researchers' related grants or generated by a large language model (LLM) based on their publications.
Top 5 Research Topics
ANZSRC Field of Research (FoR)
Health Policy | Sociology | Sociology not elsewhere classified | Public Health and Health Services not elsewhere classified | Public Health and Health Services | Social Policy
ANZSRC Socio-Economic Objective (SEO)
Public Health (excl. Specific Population Health) not elsewhere classified | Expanding Knowledge through Studies of Human Society | Social Structure and Health |
Related Links
Publications
Hepatitis B and hepatitis C in southeast and southern Asia: challenges for governments
Publisher: Elsevier BV
Date: 11-2016
Expanding community engagement and advocacy in chronic viral hepatitis
Publisher: Elsevier BV
Date: 10-2022
The ongoing impacts of hepatitis C - A systematic narrative review of the literature
Publisher: Springer Science and Business Media LLC
Date: 18-08-2012
Essential components in developing public policy to control viral hepatitis: lessons from Taiwan
Publisher: Springer Science and Business Media LLC
Date: 04-09-2015
DOI: 10.1007/S12072-015-9660-Y
Abstract: Over 500 million people are estimated to be infected with chronic viral hepatitis with an increasing burden resulting from the infections. In 2010, the World Health Organization recommended national governments develop effective strategies to reduce the global impact of viral hepatitis. Taiwan, to support the implementation of the world's first national vaccination program, developed the first of a series of 5-year national strategies in 1982. Our study sought to identify the essential constituents of the strategic response to chronic viral hepatitis in Taiwan, which could then be used by other governments to inform best practice in strategy development. Semistructured qualitative interviews were conducted with key participants involved in the national response to viral hepatitis in Taiwan (n = 26) and a review of the literature. The development of a national strategic response is one of several factors in reducing the burden of viral hepatitis in Taiwan. Other critical factors are effective health services, a prioritization of disease prevention, government funding of science and technology, and sustained advocacy informed by a rigorous evidence base. While there has been significant policy, structural and financial commitment to reduce the burden of related to viral hepatitis, essential challenges remain. Taiwan's viral hepatitis policy response focuses on clinical interventions and would be strengthened by a broader involvement of interdisciplinary stakeholders, including people with viral hepatitis, and stronger coordination between the policy and government agencies responsible for their implementation.
A qualitative investigation of barriers, support-seeking and coping among South Sudanese people with chronic hepatitis B in Australia
Publisher: CSIRO Publishing
Date: 2019
DOI: 10.1071/PY19015
Abstract: This inquiry examines health-seeking practices and challenges among South Sudanese people from refugee backgrounds with chronic hepatitis B in Australia. Fifteen semi-structured interviews were conducted. Using interpretative thematic analysis, the results revealed four themes, consisting of barriers and facilitators to clinical follow up, treatment and support-seeking practices and coping responses. Time constraints, having ergent views about treatment decisions and perceived inadequate clinical support were also identified as barriers. Being referred to a specialist, being aware of the risk associated with liver cancer and sending reminders about appointments were identified as facilitators to clinical follow up. Treatment-seeking practices involved both biomedical and alternative therapies. Participants mainly drew on their social networks and supports, religious beliefs and in idual resilience as coping strategies. The findings are important for improving access to treatment and care and support for people with chronic hepatitis B from the South Sudanese community.
From the big three to the big four
Publisher: Elsevier BV
Date: 06-2015
The hepatitis B epidemic and the urgent need for cure preparedness
Publisher: Springer Science and Business Media LLC
Date: 26-07-2018
Untangling the conflation of ‘young adults’ and ‘young people’ in STI and sexual health policy and sex education
Publisher: Informa UK Limited
Date: 02-02-2018
Experience as Evidence: The Prospects for Biographical Narratives in Drug Policy
Publisher: SAGE Publications
Date: 10-04-2020
Abstract: Programs and policies are increasingly framed by the logics of “evidence-based policy,” a term subject to critical scrutiny and change after it emerged as an explicit valuing of specific types of quantitative data as objective, and a devaluing of most types of qualitative data. The transfer of “evidence-based” approaches to drug policy was mobilized by a distrust of people who use drugs, and of people who work with them. This distrust remains important, but contemporary policy also mobilizes in idual narratives and lived experience through the growing use of biographical stories. Contemporary drug policy, like other policy areas, is also increasingly constituted by changing forms of technology, through new types of data use and data linkage, and of digital and social media. In this article, we consider the current and likely future impacts of changes to policy. We examine two Australian policies: the Australian Priority Investment Approach to Welfare (Try, Test and Learn), and the child protection reform, Their Futures Matter. Both use the “investment approach” to calculate policy costs and aims, represent important developments in the policy figuring of populations, and affect the well-being of many people who use drugs. Based on analysis of these policies, and interviews with people who use drugs who participated in a qualitative study on blood-borne virus serodiscordance, we ask, what are the likely effects, risks, and benefits of these changes for people who use drugs and others subject to public scrutiny and distrust? We argue that as long as the stigmatization of drug use remains prevalent, it is unlikely that the potential for more sophisticated and just recognition of the complexity of drug use will find a place in the forms of information and knowledge recognized in policy as evidence.
The unvirtuous cycle of discrimination affecting people with hepatitis B: a multi-country qualitative assessment of key-informant perspectives
Publisher: Springer Science and Business Media LLC
Date: 31-05-2022
DOI: 10.1186/S12939-022-01677-6
Abstract: An estimated 296 million in iduals live with chronic hepatitis B worldwide, most have not been diagnosed and remain at risk of liver disease and cancer. People with hepatitis B often face discrimination that denies them employment or education opportunities, results in unfair treatment at work or in school, limits their ability to emigrate to certain countries, and in some cases prohibits them from serving in the military. Discrimination specific to hepatitis B has not been widely documented within the literature. This study aims to investigate and describe hepatitis B related discrimination, document discrimination occurring around the globe, and provide initial recommendations for addressing discrimination using key informant interviews. Purposive and snowball s ling were used to identify potential key informants for qualitative interview. Key informants identified as community health leaders, public health scientists, doctors, and researchers, many of whom were also living with hepatitis B. Using a semi-structured guide, participants were asked to describe their experience and any challenges for people living with hepatitis B including marginalization and its’ consequences. A codebook was used to guide the organization of data for analysis, and all transcripts N = 17 were double coded. The overarching themes identified from interviews demonstrate explicit experiences with discrimination of those directly affected, the psychological responses, and the negative health outcomes associated with the unvirtuous cycle of discrimination. All key informants reported on the substantial quality of life implications and often poorer health outcomes resulting from hepatitis B discrimination. Participants also identified the significant impact of hepatitis B discrimination occurring within a range of education-based services across several countries as well as military exclusion or removal if in iduals are found to have hepatitis B. Our data demonstrate that hepatitis B discrimination has a significant impact. Discrimination can occur at various points in life from education, to seeking employment, to marriage, to restrictions on entry, travel and stay in other countries. This study demonstrates the impact of discrimination and the need for future research that can lead to policy change and protections for people living with and impacted by hepatitis B.
The freighted social histories of HIV and hepatitis C: exploring service providers' perspectives on stigma in the current epidemics
Publisher: BMJ
Date: 16-06-2023
DOI: 10.1136/MEDHUM-2022-012382
Abstract: A virus has a social history. In the case of the hepatitis C virus (HCV) and HIV, this history is one involving stigma and discrimination, advocacy and activism, and recent dramatic improvements in treatment. These social histories influence the experience of people who live with the viruses, and those who work with them. One aspect of this is the impact of social changes on the biographical disruption and integration brought about by illness. Healthcare practitioners who see significant improvements in the effectiveness of treatment for a condition over the course of their professional life will incorporate those changes into their own history and their relationship to that condition. This article is based on a study of the experiences of serodiscordance, or mixed infection status, in families living with HIV and two types of viral hepatitis, hepatitis B and hepatitis C. The article explores the perspectives of healthcare workers who work with people affected by these viruses, who were asked about their experiences in working with serodiscordance in families. Interviews revealed that changing social meanings given to bloodborne viruses, and changes to treatment over time, held a significant place in the accounts that service providers gave of their work. In asking them to describe their work with HIV and HCV, we were also asking about work that has been shaped by changing patterns and sources of stigma, and recently reshaped by changes in treatment and outcomes. While typically the experiences of patients and their families are used to investigate the social histories of diagnosis and stigma, the professional perspectives and life stories of the service providers who work with them are also revealing. We heard accounts in which histories as well as current regimes were prominent, illuminated further by insights from the sociology of health on narrative and biographical disruption.
“It's time!”: A qualitative exploration of the acceptability of hepatitis C notification systems to help eliminate hepatitis C
Publisher: Elsevier BV
Date: 11-2021
DOI: 10.1016/J.DRUGPO.2021.103280
Abstract: In Australia, the unrestricted and subsidised availability of direct-acting antivirals for people living with hepatitis C has made the elimination of hepatitis C possible. Recent declining treatment uptake, however, may jeopardise the attainment of this goal. Notification data already exist in many jurisdictions but are presently under-utilised. Despite growing interest in the potential use of data to link people diagnosed with hepatitis C to treatment services, little evidence exists on the acceptability and feasibility of this approach. Our study aimed to address this gap and guide future strategies to enhance treatment uptake. Twenty-seven people with lived experience of injecting drug use and/or hepatitis C participated in two focus groups exploring views on implementing a system of hepatitis C notification follow-up in Australia, that would direct people to treatment and care. Additionally, qualitative interviews were conducted with 20 key informants to examine the ethical, logistical, and regulatory implications of implementation. Data were thematically analysed using the Theoretical Framework of Acceptability - which has been used to assess the acceptability of interventions from the perspectives of intervention deliverers and recipients. While there were clear reservations, there was consensus that the potential benefits of using notification data to contact people with hepatitis C, outweigh harms. The method of contact (including by whom and how), whether follow-up should include recent versus historical diagnoses, and if record linkage should be used to enhance follow-up were important considerations. Ethical and logistical concerns were raised about the risk that such an approach could exacerbate stigma and discrimination. Findings highlight potentially significant benefits of using notifications data to increase access to hepatitis C treatment, a novel approach that can contribute to hepatitis C elimination efforts and prevent hepatitis C-related morbidity and mortality.
Hepatitis B and Liver Cancer: Community Awareness, Knowledge and Beliefs of Middle Eastern Migrants in Sydney, Australia
Publisher: MDPI AG
Date: 12-08-2021
Abstract: Chronic hepatitis B (CHB) is a significant global health challenge given an increasing morbidity and inadequate public health response, Migrant populations are primarily affected by CHB in industrialised countries, and while more than 7% of Australians with CHB were born in Africa or the Middle East, little is known of their awareness or knowledge of viral hepatitis and its impact. This qualitative study, using semi-structured interviews with Assyrian and Arabic community leaders and focus groups (FG) with 66 community members sought to identify hepatitis and liver cancer knowledge and awareness among local Arabic and Assyrian-speaking communities in Western Sydney. Interviews were thematically analysed, with findings framing the topics for the FGs which were analysed using a framework analysis. Themes identified across both methods included limited awareness or knowledge of viral hepatitis or liver cancer, stigma associated with both conditions, variable levels of health literacy and trust in medical practitioners, and fear that receiving “bad news” would deter people from seeking care. Preferred sources of health information were family doctors, family members, the internet and the ethnic media. The study gave valuable information for the design of an educational program and provided useful information for the planning of culturally appropriate hepatitis screening and treatment services for these communities.
Pathway to global elimination of hepatitis B: HBV cure is just the first step
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 05-2023
DOI: 10.1097/HEP.0000000000000430
Abstract: Hepatitis B (HBV) is a major cause of global morbidity and mortality, and the leading cause of liver cancer worldwide. Significant advances have recently been made toward the development of a finite HBV treatment that achieves permanent loss of HBsAg and HBV DNA (so-called “HBV cure”), which could provide the means to eliminate HBV as a public health threat. However, the HBV cure is just one step toward achieving WHO HBV elimination targets by 2030, and much work must be done now to prepare for the successful implementation of the HBV cure. In this review, we describe the required steps to rapidly scale-up future HBV cure equitably. We present key actions required for successful HBV cure implementation, integrated within the World Health Organization (WHO) Global Health Sector Strategy (GHSS) 2022–2030 framework. Finally, we highlight what can be done now to progress toward the 2030 HBV elimination targets using available tools to ensure that we are preparing, but not waiting, for the cure.
The personal and social impact of chronic hepatitis B: A qualitative study of Vietnamese and Chinese participants in Australia
Publisher: Hindawi Limited
Date: 16-10-2021
DOI: 10.1111/HSC.13197
A qualitative exploration of enablers for hepatitis B clinical management among ethnic Chinese in Australia
Publisher: Wiley
Date: 18-03-2021
DOI: 10.1111/JVH.13495
Challenges in managing patients in Australia with chronic hepatitis B: The General Practitioners' perspective
Publisher: Elsevier BV
Date: 10-2013
Abstract: General Practitioners (GPs) are essential to reducing the impact of chronic hepatitis B (CHB) given their clinical management role where only 56% of people with the infection in Australia have been diagnosed. This qualitative study aimed to identify the challenges GPs face in effectively responding to CHB. Semi-structured interviews were conducted with 26 GPs self-identifying as having a 'high caseload' of patients and/or a particular interest in CHB. Participants were recruited from five jurisdictions and came from erse ethnicities, clinical experience and practice profile. Interview data were analysed according to the principles of grounded theory. Patient and GP knowledge, a lack of community awareness, and language and cultural ersity impeded the GP response to CHB. Communication with specialists was reported as challenging with unclear referral pathways, limited feedback from specialists after referral, and poor liaison and support for managing people living with CHB. Regulations restricting GPs capacity to respond included the lack of prescribing opportunities, fear of Medicare auditing for screening the populations most at risk, and inadequate financial support given the complexity of CHB and the communities most affected by the infection. General Practitioners require additional skills and resources to support the effective management of people with CHB. These include improved awareness and knowledge about the infection, adequate financial resources to support patient management, and effective referral pathways and support.
An Intersectional Approach to Hepatitis B
Publisher: MDPI AG
Date: 10-03-2023
Abstract: Hepatitis B is a chronic condition, primarily associated with hepatitis B viral infection in early life. The failure of prevention and appropriate management can lead to subsequent liver cirrhosis and cancer. Hepatitis B most commonly affects people born in Asia and Sub-Saharan Africa and their global diasporas. The physical, psychological, and social impacts of hepatitis B are strongly influenced by sex and gender. Inequities in access to timely, sensitive diagnosis and effective management arise from interactions between structural inequalities related to race, ethnicity, Indigenous/settler status, class, and geography. The biomedical response to hepatitis B has led to advances in prevention, diagnosis, and treatment, but many affected communities have explanatory health belief models that differ from that of biomedicine. We argue that an intersectional approach, led by affected people and communities, can integrate biomedicine with the lived experience and social context that give purpose to and shape all personal, communal, clinical, and public health responses to hepatitis B. This approach has the potential to enable a consciously equitable, effective response to the biopsychosocial complexities of hepatitis B, improve the health and wellbeing of people living with hepatitis B, and reduce hepatitis B-associated mortality.
A survey of knowledge, attitudes, barriers and support needs in providing hepatitis B care among GPs practising in Australia
Publisher: Springer Science and Business Media LLC
Date: 02-06-2022
DOI: 10.1186/S12875-022-01754-3
Abstract: In Australia, only 22% of people with chronic hepatitis B (CHB) are clinically managed and a national effort is engaging primary care workforce in providing CHB-related care. This study explored CHB-related knowledge, attitudes, barriers and support needs of general practitioners (GPs). A survey was sent to a random s le of 1,000 Australian GPs in April- October 2018 134 of 978 eligible GPs completed the questionnaire (14%). Respondents had high knowledge of at-risk populations ( 79%) and hepatitis B serology (82%), and most saw hepatitis B testing and monitoring as part of their work (95% and 86%, respectively). However, the survey revealed low knowledge, awareness and intention with respect to hepatitis B treatment: 23% correctly understood treatment initiation 40% were aware that treatment for CHB could be dispensed in the community 23% agreed that prescribing was part of their work. Lack of time was considered the greatest barrier (38%) and clear guidelines was the most important facilitator to providing care (72%). Interventions are needed to generate interest and skills to provide CHB-related care by GPs.
Social impacts of living with chronic hepatitis B in South Sudanese community in Australia
Publisher: Informa UK Limited
Date: 22-06-2022
Controlling viral hepatitis: Public policy lessons from Taiwan
Publisher: Elsevier BV
Date: 08-2015
Addressing cultural diversity: the hepatitis B clinical specialist perspective
Publisher: Informa UK Limited
Date: 31-08-2017
Eradicating hepatitis C: The need for a public health response
Publisher: Informa UK Limited
Date: 22-06-2017
DOI: 10.1080/17441692.2017.1342851
Abstract: Hepatitis C is a global public health issue affecting 150-170 million people worldwide, and over 227,000 Australians with an increasing morbidity resulting from the infection. The Australian Government funded access through the national health scheme to Direct Acting Antiviral (DAA) medication for all people with hepatitis C, regardless of disease staging or mode of transmission to eradicate hepatitis C in Australia. The availability of these drugs not only alters the end result of hepatitis C treatment from that of sustained viral response to cure, but necessitates a refocusing of the public health response to hepatitis C. This project, conducted prior to this funding announcement, interviewed key stakeholders in Australia to investigate the potential impact of DAAs on in iduals with hepatitis C and their public health implications. The findings include that while DAAs are revolutionary, there remains essential barriers to their uptake including stigma and discrimination, and a lack of attention to the systematic implementation of the cure.
Understanding how to live with hepatitis B: a qualitative investigation of peer advice for Chinese people living with hepatitis B in Australia
Publisher: Springer Science and Business Media LLC
Date: 18-03-2022
DOI: 10.1186/S12889-022-12907-5
Abstract: Hepatitis B is a chronic viral infection, a leading cause of primary liver cancer and identified as a major public health priority by the World Health Organization. Despite a high proportion of people in Australia who have been diagnosed with hepatitis B, significant gaps remain in health care access and in accurate knowledge about hepatitis B. Most people with hepatitis B in Australia were born in China, where the infection has an intergenerational impact with significant social implications resulting from the infection. Understanding how people of Chinese ethnicity with hepatitis B understand and respond to hepatitis B is imperative for reducing morbidity, mortality, and the personal and social impact of the infection. Qualitative semi-structured interviews with people with hepatitis B of Chinese ethnicity recruited through a specialist service identified the advice people with hepatitis B thought was important enough to inform the experience of people newly diagnosed with hepatitis B. A thematic analysis of the data privileged the lived experience of participants and their personal, rather than clinical, explanations of the virus. Hepatitis B infection had psychological and physical consequences that were informed by cultural norms, and to which people had responded to with significant behavioural change. Despite this cohort being engaged with specialist clinical services with access to the most recent, comprehensive, and expert information, much of the advice people with hepatitis B identified as important for living with hepatitis B was not based on biomedical understandings. Key suggestions from people with hepatitis B were to form sustainable clinical relationships, develop emotional resilience, make dietary changes, regulate energy, and issues related to disclosure. 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.
Perceptions of HIV cure research among people living with HIV in Australia
Publisher: Public Library of Science (PLoS)
Date: 24-08-2018
Women with hepatitis B: how mothers with chronic hepatitis B understand and experience the prevention of mother-to-child transmission interventions in Victoria, Australia
Publisher: CSIRO Publishing
Date: 26-09-2022
DOI: 10.1071/PY22014
Abstract: Background Mother-to-child transmission (MTCT) of hepatitis B can be prevented with targeted interventions however, MTCT continues to occur in Australia and globally. This qualitative research investigated how mothers with chronic hepatitis B (CHB) understand and experience interventions for the prevention of MTCT of CHB (PMTCT-CHB) in Victoria, Australia. Methods Semi-structured interviews were conducted with women with CHB. Participants were recruited through purposive and snowballing s ling. Interviews explored the women’s experience of care for themselves and their infants aimed at PMTCT-CHB. Interviews were conducted over the phone with a qualified interpreter where required. The consolidated criteria for reporting qualitative research framework was used with data thematically analysed. This study was co-designed with mothers with CHB through a Community Advisory Group established for this research coordinated and supported by LiverWELL and the researchers. Results Sixteen women were interviewed. Although most women understood the purpose of hepatitis B vaccination, there were significant gaps in information and education provided to mothers regarding PMTCT-CHB. These gaps included understanding of the extent of protection of vaccination, breastfeeding with CHB, post-vaccination testing for infants and lack of clarity of the woman’s own hepatitis B status. There was notable fear and worry associated with hepatitis B transmission, with emotional support for mothers identified as a major gap in service delivery. Additionally, some women experienced stigma and discrimination due to their hepatitis B and refugee status. Conclusions This study explored how mothers with CHB understand and experience interventions to prevent MTCT. Our findings reveal substantial gaps in delivery of information and care in the context of PMTCT-CHB in Victoria. Our findings can support development of evidence-based interventions and systems to improve healthcare for mothers with CHB and their infants, and thereby reduce possible CHB transmission and other negative outcomes, including stigma and discrimination.
Aiming for the elimination of viral hepatitis in Australia, New Zealand, and the Pacific Islands and Territories: Where are we now and barriers to meeting World Health Organization targets by 2030
Publisher: Wiley
Date: 27-09-2019
DOI: 10.1111/JGH.14457
Abstract: Viral hepatitis affects more than 320 million people globally, leading to significant morbidity and mortality due to liver failure and hepatocellular carcinoma (HCC). More than 248 million people (3.2% globally) are chronically infected with hepatitis B virus (HBV), and an estimated 80 million people (1.1% globally) are chronically infected with hepatitis C virus (HCV). In 2015, more than 700 000 deaths were directly attributable to HBV, and nearly 500 000 deaths were attributable to HCV infection 2-5% of HBV-infected people develop HCC per annum irrespective of the presence of cirrhosis, whereas 1-5% HCV-infected people with advanced fibrosis develop HCC per annum. The rapidly escalating global mortality related to HBV and HCV related viral hepatitis to be the 7th leading cause of death worldwide in 2013, from 10th leading cause in 1990. Australia, New Zealand, and Pacific Island Countries and Territories fall within the World Health Organization Western Pacific Region, which has a high prevalence of viral hepatitis and related morbidity, particularly HBV. Remarkably, in this region, HBV-related mortality is greater than for tuberculosis, HIV infection, and malaria combined. The region provides a unique contrast in viral hepatitis prevalence, health system resources, and approaches taken to achieve World Health Organization global elimination targets for HBV and HCV infection. This review highlights the latest evidence in viral hepatitis epidemiology and explores the health resources available to combat viral hepatitis, focusing on the major challenges and critical needs to achieve elimination in Australia, New Zealand, and Pacific Island Countries and Territories.
Torres Strait Islanders‘ understandings of chronic hepatitis B and attitudes to treatment
Publisher: CSIRO Publishing
Date: 2016
DOI: 10.1071/PY14130
Abstract: Indigenous Australians are disproportionally affected by hepatitis B compared with non-Indigenous Australians. The higher prevalence of hepatitis B among Indigenous Australians has been linked to an increased incidence of liver cancer in this population. There is evidence that comprehensive programs of hepatitis B virus management, which include liver cancer surveillance and appropriate antiviral therapy, offer a cost-effective approach to reduce the incidence of liver cancer in Australia. This paper reports on data from the first study investigating understandings of hepatitis B and attitudes to treatment among Torres Strait Islanders living with chronic hepatitis B. Forty-two participants completed an interview questionnaire. Participants typically had an unclear understanding of hepatitis B and reported significant gaps in monitoring and follow up. A majority of participants indicated a willingness to use treatment if required. The findings of this study suggest the need for a new service delivery model that is appropriate to remote communities such as the Torres Strait Islands, to improve hepatitis B follow up, disease monitoring and management, and where appropriate, the uptake of treatment.
The role of explanatory models of chronic hepatitis B on illness experience: a qualitative study of Vietnamese participants in Australia
Publisher: Informa UK Limited
Date: 10-05-2021
Exploring the Public Health and Social Implications of Future Curative Hepatitis B Interventions
Publisher: MDPI AG
Date: 17-11-2022
DOI: 10.3390/V14112542
Abstract: Hepatitis B is a significant global health issue where the 296 million people estimated to live with the infection risk liver disease or cancer without clinical intervention. The World Health Organization has committed to eliminating viral hepatitis as a public health threat by 2030, with future curative hepatitis B interventions potentially revolutionizing public health responses to hepatitis B, and being essential for viral hepatitis elimination. Understanding the social and public health implications of any cure is imperative for its successful implementation. This exploratory research, using semi-structured qualitative interviews with a broad range of professional stakeholders identifies the public health elements needed to ensure that a hepatitis B cure can be accessed by all people with hepatitis B. Issues highlighted by the experience of hepatitis C cure access include preparatory work to reorientate policy settings, develop resourcing options, and the appropriateness of health service delivery models. While the form and complexity of curative hepatitis B interventions are to be determined, addressing current disparities in cascade of care figures is imperative with implementation models needing to respond to the cultural contexts, social implications, and health needs of people with hepatitis B, with cure endpoints and discourse being contested.
Hidden Carers? a Scoping Review of the Needs Of Carers of People with HIV in the Contemporary Treatment Era
Publisher: Bristol University Press
Date: 11-2018
DOI: 10.1332/239788218X15411705099442
Abstract: The role of carers in supporting people with HIV is largely hidden in Western countries in the contemporary era of antiretroviral treatments. Little is known about their needs. A scoping review was undertaken to describe the research available on the needs of this group and identify gaps in existing knowledge. Findings reveal that carers of people with HIV have similar needs to other carers but are currently mostly invisible to support services. The article suggests that the discourse of independence underpinning the new HIV treatment era may be difficult for carers to ‘disrupt’ by naming what they do as ‘care’.
Professional perspectives on serodiscordant family service provision in the context of blood-borne viruses
Publisher: Informa UK Limited
Date: 18-08-2022
Hepatitis B knowledge and associated factors among people with chronic hepatitis B
Publisher: Elsevier BV
Date: 12-2015
Abstract: To assess hepatitis B knowledge among people with chronic hepatitis B (CHB) in Australia. People with CHB in three Australian jurisdictions completed a self-administered questionaire, including 24 hepatitis B knowledge questions across four domains: transmission natural history epidemiology and prevention and clinical management. Ninety-three people completed the survey. Mean age was 45 years, 43% were women and 93% were born overseas (75% from Asia). Mean total knowledge score was 55 out of 100 with 17 participants (18%) scoring ≥75 (defined as a high knowledge). Clinical management scored the lowest (median: 25) and natural history scored the highest (median: 80). In adjusted linear regression, tertiary education (vs. secondary and under) was associated with higher knowledge score (β: 11.95 95%CI: 2.45, 21.44 p=0.01). In adjusted logistic regression, very good English proficiency (vs. limited/no proficiency) was associated with high knowledge (OR: 7.65 95%CI: 1.94, 30.19 p<0.01). Participants reporting hepatitis B-related anxiety demonstrated a significantly higher knowledge score compared to those reporting no such anxiety (β: 15.11 95%CI: 4.40, 25.81 p<0.01). Hepatitis B-related knowledge gaps were identified among people with CHB. Interventions to improve knowledge should focus on people with low levels of academic education and limited English proficiency.
Families Living with Blood-Borne Viruses: The Case for Extending the Concept of “Serodiscordance”
Publisher: Hindawi Limited
Date: 2017
DOI: 10.1155/2017/4352783
Abstract: The concept of “serodiscordance” (mixed infection status) is primarily associated with epidemiological concerns about HIV transmission risk in couples. We make the case for extending this concept to include families with mixed HIV and viral hepatitis status. Social research on couples with mixed HIV and hepatitis C status has laid an important foundation for illuminating how experiences of serodiscordance within intimate partnerships are much broader than concerns about risk. This body of work attests to serodiscordance holding promise as a valuable concept for understanding viral infections as socially situated and intensely relational phenomena. However, serodiscordance is still limited as a concept because of its near universal focus on couples. It is rarely applied to wider relationships, including family networks beyond the couple. Despite evidence in the literature that families are affected by blood-borne viruses in multiple social, emotional, financial, and generational ways, the concept of serodiscordance does not capture these broader dynamics. Making serodiscordance more inclusive is an important step in recognising the erse ways families’ everyday lives, relationships, and futures can be entangled with HIV, hepatitis C, and hepatitis B, and for understanding how today’s era of effective treatment options might shape the “family life” of viral infections.
Report from a Viral Hepatitis Policy Forum on implementing the WHO framework for global action on viral hepatitis in North Asia
Publisher: Elsevier BV
Date: 11-2013
DOI: 10.1016/J.JHEP.2013.06.029
Abstract: The World Health Organisation (WHO) Prevention & Control of Viral Hepatitis Infection: Framework for Global Action offers a global vision for the prevention and control of viral hepatitis. In October 2012, the Coalition to Eradicate Viral Hepatitis in Asia Pacific (CEVHAP) organised the North Asia Workshop on Viral Hepatitis in Taipei to discuss how to implement the WHO Framework in the North Asia region. This paper presents outcomes from this workshop. Twenty-eight representatives from local liver associations, patient organisations, and centres of excellence in Hong Kong, Japan, Korea, and Taiwan participated in the workshop. Priority areas for action were described along the four axes of the WHO Framework: (1) awareness, advocacy and resources (2) evidence and data (3) prevention of transmission and (4) screening and treatment. Priorities included: axis 1: greater public and professional awareness, particularly among primary care physicians and local advocacy networks. Axis 2: better economic data and identifying barriers to screening and treatment uptake. Axis 3: monitoring of vaccination outcomes and targeted harm reduction strategies. Axis 4: strengthening links between hospitals and primary care providers, and secure funding of screening and treatment, including for hepatocellular carcinoma. The WHO Framework provides an opportunity to develop comprehensive and cohesive policies in North Asia and the broader region. A partnership between clinical specialists, primary care physicians, policy makers, and people with or at risk of viral hepatitis is essential in shaping future policies.
Challenges to the effective delivery of health care to people with chronic hepatitis B in Australia
Publisher: CSIRO Publishing
Date: 2012
DOI: 10.1071/SH10137
Abstract: Background The complexity of the hepatitis B natural history and its prevalence in specific populations in Australia challenges the capacity of the health system to deliver health care effectively to affected people. This study explores the challenges in delivering health care to people with chronic hepatitis B (CHB) in Australia. Methods: We conducted a grounded theory based qualitative study in which data were gathered from 70 in-depth interviews with government program officers, clinicians and health and community workers across Australia, and four focus group discussions with 40 health and community workers from the communities most at risk of CHB. Results: A systematic approach to screening populations at risk, including people born in countries with intermediate or high prevalence of CHB consensus on clinical guidelines development of a shared care framework for CHB involving general practitioners and effective communication between patients and health professionals were identified as essential. Workforce development, particularly for primary health care professionals, and developing the knowledge and capacity of health professionals to communicate effectively with people with HBV were described as other major factors in reducing the barriers to CHB treatment in Australia. Conclusion: To improve the clinical management of people with CHB in Australia, the health system needs to encourage the screening of people at risk, improve access to clinical services, and the knowledge and communication skills of primary health care and community health service providers. This study supported developing a shared care model and related infrastructures including training programs, referral pathways and clinical guidelines.
Delivering the hepatitis C cure to Aboriginal people: documenting the perspectives of one Aboriginal Health Service
Publisher: CSIRO Publishing
Date: 2018
DOI: 10.1071/PY18024
Abstract: Aboriginal and Torres Strait Islander peoples are disproportionately affected by hepatitis C, an infection that is curable with direct acting antivirals (DAAs). The Australian Government funded access to DAAs from March 2016 for all people with hepatitis C, with primary care physicians, along with clinical specialists, permitted to prescribe these treatments. The Victorian Aboriginal Health Service, in recognising the effect of liver disease from viral hepatitis within their community, and of the increased availability to DAAs, established a Liver Clinic to facilitate access to treatment for people attending the service. This study conducted semi-structured interviews to document the health service provider perspectives on the barriers and enablers to treatment explored patients’ experiences of hepatitis C treatment and cure and sought to identify possible health system-level changes to facilitate increased access and uptake of treatment by Aboriginal people. The study found the success of the clinic was supported by the multidisciplinary and accessible nature of the health service, and the relationships built over time between clinic staff and people with, or at risk of, hepatitis C. For those treated, the in idual effect of the cure not only eliminated the hepatitis C virus, but reduced shame and increased broader social participation.
Managing chronic hepatitis B: A qualitative study exploring the perspectives of people living with chronic hepatitis B in Australia
Publisher: Springer Science and Business Media LLC
Date: 03-03-2011
Responding to Australia's National Hepatitis B Strategy 2010-13: Gaps in knowledge and practice in relation to Indigenous Australians
Publisher: CSIRO Publishing
Date: 2014
DOI: 10.1071/PY12162
Abstract: The Australian National Hepatitis B Strategy 2010–13 outlines five priority areas for developing a comprehensive response to the hepatitis B virus (HBV): building partnerships and strengthening community action preventing HBV transmission optimising diagnosis and screening clinical management of people with chronic hepatitis B (CHB) and developing health maintenance, care and support for people with HBV. A scoping study was used to map the main sources and types of evidence available on the epidemiology and natural history of HBV among Indigenous Australians as well as public health responses published since 2001 (January 2001–May 2013). Gaps in current knowledge were identified. While the literature documents the success of universal infant immunisation and indicates the potential for screening initiatives to identify infected and susceptible in iduals, prevalence of CHB and hepatocellular cancer remain high in Indigenous Australians. Significant gaps in knowledge and practice were identified in relation to each of the five National Hepatitis B Strategy priority action areas. Successful implementation of the strategy in Indigenous communities and reducing the burden of HBV and hepatocellular cancer in Indigenous Australians will require increased investment in research and knowledge transfer across all priority areas.
Family imaginaries in the disclosure of a blood-borne virus
Publisher: Wiley
Date: 23-06-2021
Abstract: Contemporary sociological work has emphasised that family is not static, but actively shaped by ideas of who and what makes family. Disclosure of an illness, including diagnosis of stigmatised infections such as HIV, hepatitis B virus and hepatitis C virus, can change the dynamics of family relationships. This paper draws on 61 qualitative semi‐structured interviews conducted between 2017 and 2019 with people in Australia with one or more of these blood‐borne viruses (BBVs) and their family members, to understand the experiences of serodiscordant (mixed viral status) families. Through a thematic analysis, we explore the family imaginaries that participants evoked when describing their disclosure practices in relation to (self‐defined) family members, revealing how some participants disclosed in ways that enabled them to shape their family, to maintain boundaries between self and family or to protect family from distress. Participants' accounts of disclosure to family revealed imaginaries of family as a precious web of connections to be nurtured or protected, but also as sites of ambivalent belonging and complex history. We conclude that BBV disclosure practices within families reveal important ideas about families that are imagined in response to the threat of loss, change and stigma.
Corrigendum to: “Report from a Viral Hepatitis Policy Forum on implementing the WHO framework for global action on viral hepatitis in North Asia” [J Hepatol 2013;59:1073–1080]
Publisher: Elsevier BV
Date: 04-2014
Assessing the feasibility, acceptability and impacts of an education program on hepatitis B testing uptake among ethnic Chinese in Australia: results of a randomised controlled pilot study
Publisher: Springer Science and Business Media LLC
Date: 15-10-2021
DOI: 10.1186/S12889-021-11916-0
Abstract: In Australia, Chinese migrants are among the populations most affected by hepatitis B virus (HBV) infection but often experience late diagnosis or access to clinical care. This study aims to explore approaches to increase HBV testing in Australia’s Chinese community and inform evaluation planning, specifically to i) assess the feasibility and acceptability of HBV educational programs, and ii) compare HBV testing uptake in people receiving a tailored education resource focussing on liver cancer prevention compared with a standard HBV education package. This is a pre-post mixed-methods pilot and feasibility study. People of Chinese ethnicity and unsure of their HBV infection or immunity status were recruited from ten community sites in Melbourne, Australia in 2019–2020. Participants were randomised to receive an education package (comprised of a leaflet and in-person one-on-one educational session) with a focus on either 1) standard HBV-related information, or 2) liver cancer prevention. Participants completed a baseline questionnaire prior to receiving the intervention and were followed up at 6 months’ time for a questionnaire and an opt-in semi-structured interview. Primary study outcomes included feasibility of study procedures, measured by recruitment, participation, and retention rates acceptability of the education program assessed by acceptability scores and HBV testing uptake rate in each arm. Secondary outcomes include HBV-related knowledge change, assessed by pre-post comparison and factors affecting participants’ testing behaviour analysed using qualitative data. Fifty-four participants received an education package baseline and follow-up data from 33 (61%) were available. The study procedures of recruitment and retention were feasible the acceptability of the education program was moderate with improved HBV-related knowledge observed. Four participants self-reported being tested: one (1/15, 7%) in the standard HBV information group and three (3/18, 17%) in the liver cancer prevention information group. Factors identified as affecting testing included perceived relevance and seriousness of HBV, healthcare access and costs of testing, and perceptions of the role of primary care providers in HBV-related care. A tailored education program targeting ethnic Chinese in Australia was feasible with moderate acceptability. A larger study is required to determine if a liver cancer prevention message would improve HBV testing uptake in Chinese community than standard HBV education message. Supports from healthcare providers, community-based testing programs, and public health education programs are likely needed to motivate diagnostic testing among Chinese people at risk of HBV infection.
Hepatitis B-related concerns and anxieties among people with chronic hepatitis B in Australia
Publisher: Briefland
Date: 21-05-2016
Treading lightly: Finding the best way to use public health surveillance of hepatitis C diagnoses to increase access to cure
Publisher: Elsevier BV
Date: 2020
Hepatitis B and pregnancy: understanding the experiences of care among pregnant women and recent mothers in metropolitan Melbourne
Publisher: Springer Science and Business Media LLC
Date: 23-04-2022
DOI: 10.1186/S12889-022-13112-0
Abstract: Pregnant women are a priority group for hepatitis B testing. Guideline-based care during antenatal and post-partum periods aims to prevent mother-to-child transmission of hepatitis B virus and lower the risk of liver complications in mothers. This qualitative study explored knowledge of hepatitis B and experiences of hepatitis B related care among pregnant women and mothers. Semi-structured interviews were conducted with thirteen women with hepatitis B who were attending antenatal or post-partum hepatitis B care. The interviews were thematically analysed to assess knowledge and understanding of hepatitis B. Participants were recruited from specialist clinics in metropolitan Melbourne between August 2019 and May 2020. Four major themes were identified from interviews: (1) knowledge and understanding of hepatitis B, (2) treatment pathways, (3) accessing hepatitis B related care, and (4) disclosing status to friends. Most participants displayed an understanding of hepatitis B transmission, including mother to child transmission. The main motivator of post-partum attendance was reassurance gained concerning their child’s health. Sources of hepatitis B information included doctors, online information and family. Participants identified parents and siblings as sources of support and reported an unwillingness to disclose hepatitis B status to friends. Women attending antenatal or post-partum care reported having overall positive experiences, particularly regarding reassurance of their child’s health, but displayed misconceptions around horizontal transmission. Knowledge gained from these results can contribute to the development of targeted models of care for pregnant women and mothers with young children to ensure their successful linkage to care.
Achieving a hepatitis C cure: a qualitative exploration of the experiences and meanings of achieving a hepatitis C cure using the direct acting antivirals in Australia
Publisher: Springer Science and Business Media LLC
Date: 04-08-2018
Mapping the delivery of interventions for vaccine-preventable infections in pregnancy in Victoria, Australia
Publisher: CSIRO Publishing
Date: 06-02-2023
DOI: 10.1071/PY22158
Abstract: Background Standard care for pregnant women includes universal screening for hepatitis B, and administration of influenza and pertussis vaccination to women and hepatitis B infant vaccination. This study explored how perinatal services relating to the prevention of these vaccine-preventable diseases are delivered to women and their infants in Victoria, Australia. Methods Two online surveys investigated service delivery for the prevention of influenza, pertussis and hepatitis B to identify barriers to optimal care during January–June 2021 (1) The Birthing Hospitals Survey captured facility-level information about service delivery for influenza and pertussis vaccination, and interventions to prevent mother-to-child-transmission of chronic hepatitis B (CHB) and (2) The Healthcare Providers Survey captured in idual staff perceptions and knowledge in community and hospital settings. Results Thirty-four hospital unit managers (61%) completed The Birthing Hospitals Survey. One-hundred and forty participants completed The Healthcare Providers Survey. Half of the birthing hospitals provided influenza (50%) and pertussis (53%) vaccinations to pregnant women, and 53% provided an infectious diseases service for women with CHB. Barriers to optimal care delivery included reliance on pregnant woman’s self-report to confirm influenza, pertussis vaccination and CHB status, lack of standardised reporting, inadequate workforce training, poor communication between services, and lack of guideline-based clinical care for mothers with CHB and their infants. Three hospitals reported ‘stock out’ of hepatitis B immunoglobulin (HBIG). Conclusion Coordinated and standardised system and clinical care improvements are required to provide equitable care for pregnant women and their infants, including training and education for healthcare providers, improving data capture and communication among health services.
South Sudanese perceptions of health and illness in South Australia
Publisher: Emerald
Date: 23-10-2020
DOI: 10.1108/IJMHSC-10-2019-0082
Abstract: South Sudanese people form the largest number of resettled refugees in Australia between 2003 and 2004. This study aims to explore how this community understands and responds to health and illness. No study has specifically examined the concept of health and illness in the broader socio-cultural context of the South Sudanese people in Australia. The design was a qualitative study using interviews and focus group discussions with 33 South Sudanese people in Adelaide, South Australia. Participants were asked to reflect on their understanding of health and illness and influences on their access and use of health and other services. Data were electronically audio-recorded, transcribed verbatim and analysed thematically. Three main themes emerged from the analysis demonstrating complex and multifaceted views on health and illness. Participants described health as both a lack of disease and wider issues involving social belonging and participation, cultural well-being, living conditions and harmony in the society. They revealed that illnesses are predetermined by God or caused by a curse, breaking a cultural taboo, disharmony with the environment, community and ancestral spirits. Participants deeply tied their beliefs about illness causation and treatment to their historical, social and cultural lived realities, shaping their responses and health-care-seeking decisions. The current study revealed a complex understanding of health and health-care-seeking practices amongst South Sudanese Australians. The multifaceted views of health and health-care-seeking practices underscore the importance of person-centred care for culturally and linguistically erse people.
Implementation of hepatitis C cure in Australia: one year on
Publisher: Elsevier BV
Date: 04-2018
Investigating combination HIV prevention: Isolated interventions or complex system
Publisher: Wiley
Date: 2015
Understanding ‘risk’ in families living with mixed blood-borne viral infection status: The doing and undoing of ‘difference’
Publisher: SAGE Publications
Date: 08-2020
Abstract: ‘Risk’ has long been at the centre of expert and popular perceptions of transmissible and stigmatised blood-borne viral infections, such as HIV and viral hepatitis. There is a substantial body of research on transmission risk among couples with mixed viral infection status (serodiscordance). But we know very little about how families affected by HIV and viral hepatitis engage with understandings of infectiousness and how these shape family relationships in different ways. Guided by cultural theories of risk that build on Mary Douglas’ work, we draw on qualitative interviews to explore the ‘performativity’ of risk in serodiscordant families in Australia. We show how the ‘doing’ of risk could be constitutive of difference, which unsettled the family connection or deepened existing fault lines. Conversely, the ‘undoing’ of risk enabled the preservation of the family bond by rejecting difference and reframing risk as an external threat to the family in the form of stigma. We conclude that risk in the context of serodiscordant families had relational implications far beyond viral transmission and consider what our findings might mean for service provision and health promotion c aigns related to blood-borne viruses.
Management of chronic hepatitis B in the Torres Strait Islands: an identified need for a comprehensive public health approach to chronic hepatitis B in remote Australian Indigenous communities.
Publisher: CSIRO Publishing
Date: 2014
DOI: 10.1071/PY12130
Abstract: We aimed to document how health service providers in the Torres Strait Island region of northern Australia respond to chronic hepatitis B, and to identify priorities for the effective clinical management of the infection. Semi-structured qualitative interviews with 61 health service providers were conducted in 2011 in the Torres Strait and north Queensland region to explore issues affecting chronic hepatitis B management. Two critical issues were identified affecting the health service response to chronic hepatitis B: (i) the absence of a systems-based approach to clinically managing the infection and (ii) variable knowledge about the infection by the health workforce. Other issues identified were competing and more urgent health priorities, the silent nature of chronic hepatitis B infection at an in idual and systems level, inadequate resources and the transient health workforce. While people living in the Torres Strait region are screened, diagnosed and informed that they are infected with chronic hepatitis B, there is an ad hoc approach to its clinical management. An effective and coordinated public health response to this infection in remote and isolated Australian Indigenous communities needs to be developed and resourced. Critical elements of this response will include the development of clinical guidelines and workforce development.
The embodied relationality of blood-borne viruses: How families matter in the context of a stigmatised viral infection
Publisher: Elsevier BV
Date: 12-2019
DOI: 10.1016/J.SOCSCIMED.2019.112620
Abstract: This paper argues that blood-borne viruses are relationally embodied, providing an alternative ontology to the in idualising tendencies in medical science, and a more inclusive analysis of serodiscordance (mixed infection status) than the literature's focus on transmission risk in couples. We know little about the wider world of significant relationships in the lives of those with blood-borne viruses. People with HIV and hepatitis C are in a mixed-status relationship not just with intimate partners, but with other family members too. Drawing on qualitative interviews and phenomenological theory, we make the case that families (broadly defined) matter in the context of stigmatised, transmissible infections in ways that extend beyond in idual bodies and beyond the usual preoccupation with risk. Despite recent advances in the treatment of blood-borne viruses, our study shows that these infections continue to be experienced and negotiated through embodied connections to significant others, made meaningful through culturally situated understandings and expectations regarding kinship, affinity, love, shared history and obligations. Our findings encourage broader recognition of these viral infections as intercorporeal phenomena, with families intimately entangled in co-creating the meanings and experiences of disease.
More than a virus: A qualitative study of the social implications of hepatitis B infection in China
Publisher: Springer Science and Business Media LLC
Date: 08-2017
Facilitating hepatitis B clinical management in general practice: A qualitative investigation
Publisher: The Royal Australian College of General Practitioners
Date: 09-2020
Salvaging a prison needle and syringe program trial in australia requires leadership and respect for evidence
Publisher: AMPCo
Date: 10-2015
DOI: 10.5694/MJA15.00523
Logics of control and self-management in narratives of people living with HIV, hepatitis C and hepatitis B
Publisher: Informa UK Limited
Date: 07-12-2022
Related Organisations
University Of New South Wales Centre For Social Research In Health
Location: Australia
Related Funding Activities
Serodiscordance In Family Life
Start Date: 2016
End Date: 2018
Funder: Australian Research Council
View Funded ActivityStrengthening Community Responses To Hepatitis B
Start Date: 2013
End Date: 2016
Funder: Australian Research Council
View Funded ActivityApplying The Essential Elements Of A Public Health Response To Hepatitis B
Start Date: 2019
End Date: 2022
Funder: National Health and Medical Research Council
View Funded ActivityLinkage Projects - Grant ID: LP130100624
Start Date: 07-2013
End Date: 12-2017
Amount: $410,565.00
Funder: Australian Research Council
View Funded ActivityDiscovery Projects - Grant ID: DP160100134
Start Date: 06-2016
End Date: 12-2020
Amount: $307,550.00
Funder: Australian Research Council
View Funded Activity