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1.
Hepatology ; 78(3): 976-990, 2023 09 01.
Artículo en Inglés | MEDLINE | ID: mdl-37125643

RESUMEN

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.


Asunto(s)
Hepatitis B Crónica , Hepatitis B , Neoplasias Hepáticas , Humanos , Virus de la Hepatitis B , Antivirales/uso terapéutico , Hepatitis B/epidemiología , Hepatitis B/prevención & control , Hepatitis B/tratamiento farmacológico , Antígenos de Superficie de la Hepatitis B , Neoplasias Hepáticas/tratamiento farmacológico , Hepatitis B Crónica/tratamiento farmacológico
2.
BMC Public Health ; 24(1): 944, 2024 Apr 02.
Artículo en Inglés | MEDLINE | ID: mdl-38566070

RESUMEN

Almost 300 million people are living with chronic hepatitis B infection worldwide and most remain undiagnosed and at risk for liver cancer. In 2015 the World Health Organization (WHO) developed guidelines for the prevention, care, and treatment of persons with chronic hepatitis B and in early 2023 began to work on updating these guidelines. In March 2023, a self-administered, anonymous online survey was launched, aiming to identify patient preferences related to the clinical management of hepatitis B including current management, treatment, and care experiences, preferences regarding engagement with providers, and preferences related to simplifying hepatitis B care access. A sample of 560 individuals living with hepatitis B (self-identified as HBsAg positive) from 76 countries completed the survey. Key findings demonstrated that less than half (49%, N = 268) of participants regularly visited a doctor to check the health of their liver (every 6-12 months), with 37% of participants prescribed antiviral medication by a specialist (82%, N = 167) or general practitioner (13%, N = 26). Participants reported not being actively involved in care decision making with their providers (42%, N = 217), with an overwhelming majority wanting to participate in hepatitis B management and treatment choices (85%, N = 435). Participants provided qualitative and quantitative details using open-ended responses within the survey about challenges with medication affordability and receiving care from a knowledgeable provider. Overall findings demonstrated key gaps in care, management, and treatment access related to hepatitis B: identifying these gaps can be used to identify areas for improvement along the care continuum for viral hepatitis. The survey found a need for the comprehensive simplification of clinical management and health care services related to hepatitis B. A thematic analysis of the open-ended survey responses highlighted major overarching themes including the cost and access burdens associated with hepatitis B management and treatment, and challenges in finding knowledgeable providers. Results from this mixed methods survey were used to inform the WHO hepatitis B guidelines update. Efforts should continue to explore public health approaches to address barriers and facilitators to testing, care, and treatment for people with hepatitis B to improve awareness of hepatitis B and access, care, and treatment among patients and providers.


Asunto(s)
Hepatitis B Crónica , Hepatitis B , Médicos , Humanos , Hepatitis B Crónica/diagnóstico , Hepatitis B Crónica/tratamiento farmacológico , Hepatitis B Crónica/epidemiología , Hepatitis B/diagnóstico , Hepatitis B/prevención & control , Salud Pública , Organización Mundial de la Salud
3.
BMC Public Health ; 24(1): 1575, 2024 Jun 11.
Artículo en Inglés | MEDLINE | ID: mdl-38862929

RESUMEN

Over 250 million individuals live with chronic hepatitis B (CHB) infection worldwide. A significant proportion of these people often face discrimination defined as the unjust, unfair, or prejudicial treatment of a person on the grounds of their hepatitis B status. Hepatitis B related discrimination has not been widely documented in the literature. This study aims to describe the lived experience of discrimination, document its impact, and shed light on its consequences. A hepatitis B discrimination registry was launched to record self-reported discrimination associated with hepatitis B. The registry included brief demographic questions (age, gender, country of origin), discrimination-specific questions (where, when, and how discrimination occurred), and open-ended questions to detail specific experiences. The registry was distributed to hepatitis B patient/people-focused listservs, social media networks, and community-based organizations around the globe. Descriptive data were analyzed including comparative analysis by country and type of discrimination occurring along with qualitative data (open-ended responses) which were analyzed using thematic analysis techniques A total of 569 individuals responded to the survey between May 2021 and December 2023. Individuals identified as residing in the Philippines (34%; N = 194), Nigeria (11%; N = 60), Pakistan (8%; N = 45), India (6%, N = 34), Uganda (5%; N = 31), the United States of America (4%, N = 26), Ghana (3%; N = 15), Ethiopia (2%; N = 14), and other countries in smaller number with a total of 65 countries reported discrimination at least by one individual. Of these, 461 individuals shared details about their experiences of discrimination with most relating to restrictions on access to work visas, followed by in-country hepatitis B-related employment restrictions, educational-based discrimination, discrimination within the community and health facilities, and the emotional impact of hepatitis B discrimination. This is the largest primary collection of hepatitis B-associated discrimination events and highlights how hepatitis B discrimination clearly has a significant impact on individuals' lives and limits economic opportunities regardless of physical symptoms. Such impacts likely act as barriers to diagnosis and engagement in care, so need to be addressed to achieve the global hepatitis B elimination goals. The data highlight a need for global, national responses and more systematic responses to discrimination experienced by people with hepatitis B.


Asunto(s)
Salud Global , Hepatitis B Crónica , Humanos , Masculino , Femenino , Adulto , Persona de Mediana Edad , Hepatitis B Crónica/psicología , Sistema de Registros , Adulto Joven , Discriminación Social , Adolescente , Encuestas y Cuestionarios
4.
BMC Public Health ; 24(1): 611, 2024 Feb 26.
Artículo en Inglés | MEDLINE | ID: mdl-38408941

RESUMEN

BACKGROUND: People with chronic hepatitis B (CHB) commonly experience social and self-stigma. This study sought to understand the impacts of CHB-related stigma and a functional cure on stigma. METHODS: Adults with CHB with a wide range of age and education were recruited from 5 countries and participated in 90-minute qualitative, semi-structured interviews to explore concepts related to CHB-associated stigma and its impact. Participants answered open-ended concept-elicitation questions regarding their experience of social and self-stigma, and the potential impact of reduced CHB-related stigma. RESULTS: Sixty-three participants aged 25 to 71 years (15 from the United States and 12 each from China, Germany, Italy, and Japan) reported emotional, lifestyle, and social impacts of living with CHB, including prejudice, marginalization, and negative relationship and work experiences. Self-stigma led to low self-esteem, concealment of CHB status, and social withdrawal. Most participants stated a functional cure for hepatitis B would reduce self-stigma. CONCLUSIONS: CHB-related social and self-stigma are widely prevalent and affect many aspects of life. A functional cure for hepatitis B may reduce social and self-stigma and substantially improve the health-related quality of life of people with CHB. Incorporating stigma into guidelines along with infectivity considerations may broaden the patient groups who should receive treatment.


Asunto(s)
Hepatitis B Crónica , Hepatitis B , Adulto , Humanos , Estados Unidos/epidemiología , Hepatitis B Crónica/psicología , Calidad de Vida , Estigma Social , Hepatitis B/psicología , Asia , Europa (Continente)
5.
Health Promot J Austr ; 35(2): 355-364, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37348873

RESUMEN

ISSUE ADDRESSED: The COVID-19 pandemic bears many similarities to other disasters such as bushfires, earthquakes and floods. It also has distinctive features including its prolonged and recurrent nature and the social isolation induced by pandemic responses. Existing conceptual frameworks previously applied to the study of disaster, such as the Recovery Capitals Framework (RCF), may be useful in understanding experiences of the COVID-19 pandemic and in guiding agencies and governments tasked with supporting communities. METHODS: This paper presents an analysis of interviews conducted with residents of the Australian state of Victoria in 2020-2021. The RCF was used to analyse how participant experiences and well-being were influenced by seven forms of capital-social, human, natural, financial, built, cultural and political-with particular focus on the interactions between these capitals. RESULTS: Social capital featured most prominently in participants' accounts, yet the analysis revealed important interactions between social and other capitals that shaped their pandemic experiences. The RCF supported a strengths-based and holistic analysis while also revealing how inequities and challenges were compounded in some cases. CONCLUSIONS: Findings can be leveraged to develop effective and innovative strategies to support well-being and disrupt patterns of compounding inequity. Applying the RCF in the context of COVID-19 can help to link pandemic research with research from a wide range of disasters. SO WHAT?: In an increasingly complex global landscape of cascading and intersecting disasters including pandemics, flexible and nuanced conceptual approaches such as the RCF can generate valuable insights with practical implications for health promotion efforts.


Asunto(s)
COVID-19 , Desastres , Humanos , Pandemias , Australia/epidemiología , COVID-19/epidemiología , Inundaciones
6.
Cult Health Sex ; 25(9): 1214-1229, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-36476229

RESUMEN

In Australia, the response to HIV, hepatitis C and hepatitis B has largely been through the constructed category of 'blood borne viruses' which treats these viruses as an interconnected set of conditions with respect to their mode of transmission. In this paper, we explore how people understand their viral infection, and compare the logics underpinning these different understandings. In-depth interviews were conducted with 61 participants who were either living with a blood borne virus or were the family members of people living with them. Our analysis reveals that the viral infection was often described as 'just a condition that needs to be managed', albeit in potentially exhausting ways. This understanding hinged upon a biomedical logic in which viral invasion was seen as causing illness and in turn necessitating biomedical intervention. In contrast, some participants with hepatitis B presented their infection as a condition unintelligible through Western biomedical logics, defined instead by symptomology - in terms of 'liver disease', and/or 'liver inflammation'. This focus on symptomology calls into question the soundness of prevention and management responses to hepatitis B based in biomedical logics and reveals the extent to which living with a virus involves multiple, sometimes incompatible, cultural logics. The different logics underpinning HIV, hepatitis C and hepatitis B reveal shortcomings of framing these viruses together as a coherent single construct.


Asunto(s)
Infecciones por VIH , Hepatitis B , Hepatitis C , Automanejo , Virosis , Humanos , Hepatitis C/terapia , Hepatitis B/prevención & control , Lógica
7.
Med Humanit ; 49(1): 48-54, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-35710625

RESUMEN

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.


Asunto(s)
Infecciones por VIH , Hepatitis C , Humanos , Hepacivirus , Estigma Social
8.
Int J Equity Health ; 21(1): 77, 2022 05 31.
Artículo en Inglés | MEDLINE | ID: mdl-35642059

RESUMEN

BACKGROUND: An estimated 296 million individuals 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. METHODS: Purposive and snowball sampling 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. RESULTS: 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 individuals are found to have hepatitis B. CONCLUSION: 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.


Asunto(s)
Hepatitis B Crónica , Hepatitis B , Empleo/psicología , Humanos , Investigación Cualitativa , Calidad de Vida
9.
BMC Public Health ; 22(1): 536, 2022 03 18.
Artículo en Inglés | MEDLINE | ID: mdl-35303855

RESUMEN

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.


Asunto(s)
Hepatitis B , Pueblo Asiatico , Australia , China/epidemiología , Etnicidad , Hepatitis B/diagnóstico , Humanos
10.
BMC Public Health ; 22(1): 817, 2022 04 23.
Artículo en Inglés | MEDLINE | ID: mdl-35461278

RESUMEN

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.


Asunto(s)
Hepatitis B , Complicaciones Infecciosas del Embarazo , Preescolar , Femenino , Hepatitis B/prevención & control , Virus de la Hepatitis B , Humanos , Transmisión Vertical de Enfermedad Infecciosa/prevención & control , Madres , Embarazo , Complicaciones Infecciosas del Embarazo/prevención & control , Mujeres Embarazadas , Atención Prenatal
11.
Ethn Health ; 27(3): 529-541, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-32568555

RESUMEN

Introduction: Chronic hepatitis B presents significant issues to public health and clinical practices. The infection requires lifelong clinical management and is a leading risk factor for liver cancer and liver cirrhosis. Limited studies currently exist on the social impacts of living with chronic hepatitis B, especially for people from Sub-Saharan Africa. The current study explored the experiences of South Sudanese people living with chronic hepatitis B in Australia.Methods: A qualitative inquiry using face-to-face interviews with fifteen South Sudanese people with chronic hepatitis B in Australia explored the social impacts of living with chronic hepatitis B. The study purposively sampled participants who self-identified as South Sudanese with hepatitis B and over 18 years of age. Interviews were coded and analysed using thematic analysis.Results: The study identified three themes relating to the experiences of living with chronic hepatitis B, and were grouped into psychological, interpersonal and healthcare system levels. Psychological level experiences related to the uncertainty of living with chronic hepatitis B and liver cancer risk, where participants expressed persistent fear of disease progression and anxiety around death related to the disease. Interpersonal level experiences involved the disclosure of hepatitis B and its social impacts including stigma, social distancing and isolation. Healthcare system level experiences included receiving mixed messages about hepatitis B, challenges with regular testing and difficulty receiving hepatitis B treatment.Conclusion: The findings provide valuable insights into the social impacts of hepatitis B. It underlines the importance of integrated public health interventions at the community level to improve knowledge and awareness of hepatitis B which address stigma in the South Sudanese community in Australia.


Asunto(s)
Hepatitis B Crónica , Hepatitis B , Adolescente , Adulto , Australia/epidemiología , Hepatitis B Crónica/tratamiento farmacológico , Humanos , Trastornos Fóbicos , Investigación Cualitativa , Cambio Social , Estigma Social
12.
J Viral Hepat ; 28(6): 925-933, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-33662159

RESUMEN

An estimated 18% of people living with chronic hepatitis B (CHB) in Australia were born in China. While guideline-based care, including regular clinical monitoring and timely treatment, prevent CHB-related cirrhosis, cancer and deaths, over three-quarters of people with CHB do not receive guideline-based care in Australia. This qualitative study aimed to identify enablers to engagement in CHB clinical management among ethnic Chinese people attending specialist care. Participants self-identified as of Chinese ethnicity and who attended specialist care for CHB clinical management were interviewed in Melbourne in 2019 (n = 30). Semi-structured interviews covered experiences of diagnosis and engagement in clinical management services, and advice for people living with CHB. Interviews were recorded with consent; data were transcribed verbatim and thematically analysed. Receiving clear information about the availability of treatment and/or the necessity of long-term clinical management were the main enablers for participants to engage in CHB clinical management. Additional enablers identified to maintain regular clinical monitoring included understanding CHB increases risks of cirrhosis and liver cancer, using viral load indicators to visualize disease status in patient-doctor communication; expectations from family, peer group and medical professionals; use of a patient recall system; availability of interpreters or multilingual doctors; and largely subsidized healthcare services. In conclusion, to support people attending clinical management for CHB, a holistic response from community, healthcare providers and the public health sector is required. There are needs for public health programmes directed to communicate (i) CHB-related complications; (ii) availability of effective and cheap treatment; and that (iii) long-term engagement with clinical management and its benefits.


Asunto(s)
Hepatitis B Crónica , Hepatitis B , Australia/epidemiología , China/epidemiología , Etnicidad , Hepatitis B Crónica/tratamiento farmacológico , Humanos
13.
BMC Public Health ; 21(1): 1861, 2021 10 15.
Artículo en Inglés | MEDLINE | ID: mdl-34654385

RESUMEN

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.


Asunto(s)
Etnicidad , Hepatitis B , Australia , China , Estudios de Factibilidad , Hepatitis B/diagnóstico , Hepatitis B/prevención & control , Humanos , Proyectos Piloto
14.
Ethn Health ; 26(8): 1225-1241, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-31072132

RESUMEN

ABSTRACTObjective: This study utilises Kleinman's theory of explanatory models of health and illness to explore the experience of chronic hepatitis B (CHB) among Vietnamese people living in Australia. It examines how these explanatory models are formed and shaped by the broader community, and the extent to which this influences understandings and responses to CHB.Design: This study is based on semi-structured interviews with 22 Vietnamese people with CHB in Melbourne, Australia. The individual interviews ranged from 30 minutes to 1.5 hours in length, and were electronically recorded, translated where necessary and transcribed verbatim. Transcripts were thematically coded using NVivo 10, with coding themes guided by categories identified in Kleinman's explanatory models framework.Results: Fundamental to most participants' narratives was the profound impact of cultural, social and economic environments on their understandings and responses to CHB. Regardless of socio-demographic background, most participants juxtaposed biomedical elements of CHB with their own existing humoral-based health belief system. In the context of a chronic asymptomatic condition that, for the most part, does not require pharmaceutical treatment, a humoral-based health belief system provided a familiar conceptual framework from which participants could immediately respond and take control of their infection. This was observed through changes in diet and lifestyle, and the use of traditional herbal medicine in an attempt to 'cure' or halt the progression of their infection.Conclusions: By speaking to people living with CHB directly, it became clear that there is a disjuncture between what is commonly assumed by the biomedical model of CHB and what is understood by individuals with the infection. The public health burden of CHB will continue unless the healthcare system, including public health policies, deliver a hepatitis B model of care that is responsive to the needs and expectations of priority populations.


Asunto(s)
Hepatitis B Crónica , Hepatitis B , Australia , Hepatitis B Crónica/terapia , Humanos , Investigación Cualitativa , Vietnam
15.
Sociol Health Illn ; 43(6): 1422-1436, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-34160829

RESUMEN

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.


Asunto(s)
Infecciones por VIH , Virus , Revelación , Familia , Humanos , Investigación Cualitativa , Autorrevelación , Estigma Social
16.
J Gastroenterol Hepatol ; 34(1): 40-48, 2019 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-30151932

RESUMEN

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.


Asunto(s)
Carcinoma Hepatocelular/epidemiología , Hepatitis Viral Humana/epidemiología , Hepatitis Viral Humana/prevención & control , Cirrosis Hepática/epidemiología , Neoplasias Hepáticas/epidemiología , Australasia/epidemiología , Carcinoma Hepatocelular/virología , Objetivos , Hepatitis Viral Humana/diagnóstico , Hepatitis Viral Humana/tratamiento farmacológico , Humanos , Cirrosis Hepática/virología , Neoplasias Hepáticas/virología , Tamizaje Masivo , Organización Mundial de la Salud
17.
Ethn Health ; 24(7): 816-828, 2019 10.
Artículo en Inglés | MEDLINE | ID: mdl-28854823

RESUMEN

Objectives: Hepatitis B is a viral infection primarily affecting people from culturally diverse communities in Australia. While vaccination prevents infection, there is increasing mortality resulting from liver damage associated with chronic infection. Deficits in the national policy and clinical response to hepatitis B result in a low diagnosis rate, inadequate testing and diagnosis processes, and poor access to hepatitis B treatment services. While research identifies inadequate hepatitis B knowledge among people with the virus and primary health care workers, this project sought to identify how specialist clinicians in Australia negotiate cultural diversity, and provide often complex clinical information to people with hepatitis B. Design: A vignette was developed and presented to thirteen viral hepatitis specialist clinicians prior to an electronically recorded interview. Recruitment continued until saturation of themes was reached. Data were thematically coded into themes outlined in the interview schedule. Ethical approval for the research was provided by the La Trobe University Human Research Ethics Committee. Results: Key messages provided to patients with hepatitis B by clinical specialists were identified. These messages were not consistently provided to all patients with hepatitis B, but were determined on perceptions of patient knowledge, age and highest educational level. While the vignette stated that English was not an issue for the patient, most specialists identified the need for an interpreter. Combating stigma related to hepatitis B was seen as important by the specialists and this was done through normalising the virus. Having an awareness of different cultural understandings about hepatitis B specifically, and health and well-being generally, was noted as a communication strategy. Conclusion: Key core competencies need to be developed to deliver educational messages to people with hepatitis B within clinical encounters. The provision of adequate resources to specialist clinics will assist in addressing gaps in the clinical response to hepatitis B.


Asunto(s)
Competencia Cultural , Diversidad Cultural , Hepatitis B/etnología , Infectología , Hepatitis B/prevención & control , Humanos , Infectología/métodos , Entrevistas como Asunto , Educación del Paciente como Asunto
20.
Aust Fam Physician ; 46(7): 513-519, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28697296

RESUMEN

OBJECTIVE: A significant proportion of Australians with chronic hepatitis B (CHB) remains undiagnosed and unaware of their risk of liver disease and cancer. This study explored the hepatitis B testing and diagnostic experiences of people with CHB, general practitioners (GPs) and primary care nurses. METHODS: Semi-structured interviews were conducted with people who have CHB (n = 19), GPs (n = 14) and nurses (n = 5). RESULTS: The majority of patient participants with CHB were not provided with information prior to being tested, and were shocked to receive a diagnosis. Neither GPs nor nurses noted Australia's National hepatitis B testing policy as guiding their practice, and hepatitis B con-tact tracing was poorly executed. DISCUSSION: Patient participants' diagnostic experiences did not correspond with national policy recommendations. GPs and nurses need resources to provide accurate information when testing and diagnosing hepatitis B, and clear guidance about their role in contact tracing.


Asunto(s)
Hepatitis B/diagnóstico , Pacientes/psicología , Médicos de Atención Primaria/normas , Atención Primaria de Salud/normas , Adolescente , Adulto , Australia , Trazado de Contacto/métodos , Diagnóstico Precoz , Femenino , Personal de Salud/psicología , Humanos , Masculino , Tamizaje Masivo/métodos , Persona de Mediana Edad , Atención Primaria de Salud/métodos , Investigación Cualitativa
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