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Published on: December 15, 2023
More than a virus: a qualitative study of the social implications of hepatitis B infection in China
1Australian Research Centre in Sex, Health and Society, La Trobe University, 215 Franklin Street, Melbourne, Victoria, 3000, Australia. j.wallace@latrobe.edu.au.
Insights
Living with hepatitis B in China significantly impacts education, employment, and relationships due to ongoing stigma and discrimination. Addressing these social and economic factors is crucial for effective hepatitis B management.
Area of Science:
- Hepatology and Viral Hepatitis Research
- Public Health and Epidemiology
- Sociomedical Sciences
Background:
- China bears the largest burden of hepatitis B globally, with an estimated 300,000 annual deaths from related diseases.
- Despite advancements in vaccination and treatment, accessible and affordable healthcare for hepatitis B patients remains a challenge.
- Stigma and discrimination act as significant barriers to effective clinical management for individuals with hepatitis B.
Purpose of the Study:
- To investigate the personal, social, and economic impacts of living with hepatitis B in China.
- To explore the role of stigma and discrimination in the clinical management of hepatitis B.
- To inform public policy by understanding the lived experiences of people with hepatitis B.
Main Methods:
- Qualitative study employing semi-structured interviews.
- Conducted with 41 individuals living with hepatitis B across five Chinese cities.
- Participants were recruited via clinical and non-governmental organizations, with a majority (n=32) under 35 years old.
Main Results:
- Hepatitis B is experienced as an intergenerational chronic infection with profound personal and social consequences.
- Impacts are evident in educational and employment opportunities, economic prospects, and intimate relationships.
- Despite policy changes, stigma and discrimination persist, leading to social marginalization.
Conclusions:
- Public policy must address the multifaceted lived impacts of hepatitis B, including effects on families, education, employment, finances, and social standing.
- Reducing morbidity and mortality requires tackling the social determinants and personal experiences associated with hepatitis B.
- Integrating social and economic support into hepatitis B management strategies is essential.
Background:
China has the largest absolute number of people living with hepatitis B with up to 300,000 people estimated to die each year from hepatitis B related diseases. Despite advances in immunisation, clinical management, and health policy, there is still a lack of accessible and affordable health care for people with hepatitis B. Through in-depth interviews, this study identifies the personal, social and economic impact of living with hepatitis B and considers the role of stigma and discrimination as barriers to effective clinical management of the disease.
Methods:
Semi-structured qualitative interviews were held with 41 people living with hepatitis B in five Chinese cities. Participants were recruited through clinical and non-government organisations providing services to people with hepatitis B, with most (n = 32) being under the age of 35 years.
Results:
People living with hepatitis B experience the disease as a transformative intergenerational chronic infection with multiple personal and social impacts. These include education and employment choices, economic opportunities, and the development of intimate relationships. While regulations reducing access to employment and education for people with hepatitis B have been repealed, stigma and discrimination continue to marginalise people with hepatitis B.
Conclusions:
Effective public policy to reduce morbidity and mortality associated with hepatitis B needs to address the lived impact of hepatitis B on families, employment and educational choices, finances, and social marginalisation.
