Australian Research Centre in Sex, Health and Society, La Trobe University, 215 Franklin Street, Melbourne, Victoria, 3000, Australia.
China Health Program, La Trobe University, Melbourne, Australia.
Int J Equity Health. 2017 Aug 1;16(1):137. doi: 10.1186/s12939-017-0637-4.
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.
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.
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 While regulations reducing access to employment and education for people with hepatitis B have been repealed, stigma and discrimination continue to marginalise people with hepatitis B.
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.
中国是乙型肝炎患者数量最多的国家，据估计，每年有多达 30 万人死于乙型肝炎相关疾病。尽管免疫接种、临床管理和卫生政策取得了进展，但乙型肝炎患者仍然缺乏可及和负担得起的医疗保健。本研究通过深入访谈，确定了乙型肝炎患者的个人、社会和经济影响，并考虑了耻辱感和歧视作为乙型肝炎有效临床管理障碍的作用。
在五个中国城市对 41 名乙型肝炎患者进行了半结构式定性访谈。通过为乙型肝炎患者提供服务的临床和非政府组织招募参与者，其中大多数（n=32）年龄在 35 岁以下。
乙型肝炎患者将这种疾病视为一种具有变革性的代际慢性感染，对个人和社会产生了多种影响。这些影响包括教育和就业选择、经济机会以及亲密关系的发展。虽然减少乙型肝炎患者获得就业和教育机会的法规已经被废除，但耻辱感和歧视仍然使乙型肝炎患者边缘化。
为减少乙型肝炎相关发病率和死亡率而制定的有效公共政策，需要解决乙型肝炎对家庭、就业和教育选择、财务状况和社会边缘化的实际影响。
