The personal and social impact of chronic hepatitis B: A qualitative study of Vietnamese and Chinese participants in Australia
Roslyn Le Gautier, Jack Wallace, Jacqueline A. Richmond, Marian Pitts
Abstract
This study explores the lived experiences of chronic hepatitis B (CHB) among Vietnamese and Chinese-born people living in Melbourne, Australia. The aims of this study were to investigate the personal and social implications of CHB, and the extent to which these implications, including experiences of stigma and marginalisation, affect individuals' overall quality of life. This study is based on individual semi-structured interviews with 37 Vietnamese and Chinese people with CHB in Australia (n = 22 and n = 15 respectively). The interviews were conducted between February 2015 and November 2016. Electronically recorded interviews of up to 1.5 hr were conducted, translated where necessary and transcribed verbatim. Transcripts were coded using NVivo, with coding themes guided by the principles of thematic analysis. Fundamental to most participants' accounts was the experience of living in constant fear of stigma and marginalisation, which participants unanimously attributed to prevailing misconceptions about hepatitis B-related transmission routes and disease outcomes. The accompanying experiences of social isolation-whether imposed upon themselves or by others-brought on additional feelings of shame and emotional pain, which had a profound impact on participants' overall quality of life. By exploring participants' lived experiences of hepatitis B, it became clear that concerns about the clinical implications related to hepatitis B as a biomedical infection make up only a small part of their experiences. Of particular significance were personal and social concerns around transmission, disclosure as well as the impact of stigma and marginalisation on participants and their families. Adopting a comprehensive multi-pronged response to tackle the multitude of complexities surrounding this infection among key affected communities will be more effective than just recognising the physical experience of the infection.