More than a virus: a qualitative study of the social implications of hepatitis B infection in China

Abstract

BackgroundChina 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.MethodsSemi-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.ResultsPeople 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 While regulations reducing access to employment and education for people with hepatitis B have been repealed, stigma and discrimination continue to marginalise people with hepatitis B.ConclusionsEffective public policy to reduce morbidity and mortality associated with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.

<p>Impact of Stigma on People Living with Chronic Hepatitis B</p>

“…6 Employers or educational establishments can also effectively work around such legislation by asking applicants to sign a voluntary agreement for an HBV test, or by testing the liver function of applicants. 45,46 Other key underlying reasons for stigma included fear of infection, as well as negative assumptions and stereotyping around the sources of infection, with HBV transmission in adults often being perceived as being associated with the use of injectable drugs, sexual promiscuity or homosexuality. Further, research in HIV suggests that already marginalized populations such as PWIDs experience a higher level of stigma if infected with HIV owing to an "intersectional" or "layered" stigma effect 47 ; however, studies examining whether this is also the case with HBV are lacking.…”

Work–health–personal life conflicts in naive patients with chronic hepatitis B receiving initial treatment in China: a qualitative study

“…HBV infection has been identified as a barrier in work and social life by many studies but mostly from the angle of disease prejudice and discrimination/stigma. 25 47 58 59 Fatigue was only considered by doctors as a physical symptom along with nausea and digestion difficulties. 25 47 58 59 However, few studies have investigated the impacts of fatigue on work and social lives among patients with CHB.…”

“… 25 47 58 59 Fatigue was only considered by doctors as a physical symptom along with nausea and digestion difficulties. 25 47 58 59 However, few studies have investigated the impacts of fatigue on work and social lives among patients with CHB. The findings of this study add to the literature on how the sick roles, which require the avoidance of fatigue, physically and mentally impacted the work and family lives of patients with CHB.…”

“…Patients living with CHB bore extensive social implications in the Chinese context, such as limited access to education and employment and difficulty in marriage and intimate relationships. 25 47 Negative feelings and mental stress can stem from patients’ past experience of discrimination resulting in a ‘shadow’ that has a ‘lasting’ impact on how they perceive themselves. 60 Of the three types of role conflicts, strain-based conflicts are the most likely to harm relationships outside of work, 61 and lead to sleeping difficulties, exhaustion, irritability and social withdrawal.…”

“…Chinese patients with CHB reported worse quality of life than those in other countries demonstrated by stigma/discrimination in employment (eg, career development), marriage (eg, building intimate relationships) and education (eg, continuing impact of past legislation on educational choices). 25 46 47 Patients with CHB in China may not easily follow suggestions from clinicians due to limited time, energy and financial and psychological resources and may thus experience role conflicts among work, health and personal life. 48 49 The potential gaps among an ‘ideal’ employee, an involved family/friend and a patient following doctors’ advice can serve as a significant conflict source.…”