Skip to main content
Top
Published in: BMC Public Health 1/2024

Open Access 01-12-2024 | Hepatitis B | Research

Experience and impact of stigma in people with chronic hepatitis B: a qualitative study in Asia, Europe, and the United States

Authors: Mondher Toumi, Jack Wallace, Chari Cohen, Chris Marshall, Helen Kitchen, Jake Macey, Hannah Pegram, Ashley F. Slagle, Robert G. Gish, Qin Ning, Hiroshi Yatsuhashi, Markus Cornberg, Maurizia Brunetto, Florian van Bömmel, Qing Xie, Dee Lee, Noriyuki Habuka, Urbano Sbarigia, Maria Beumont-Mauviel, Angelina Villasis Keever, Yasushi Takahashi, Yiwei Lu, Ao Liu, Qiaoqiao Chen, Tetsuro Ito, Olaf Radunz, Anna Puggina, Gudrun Hilgard, Eric K.H. Chan, Su Wang

Published in: BMC Public Health | Issue 1/2024

Login to get access

Abstract

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.
Appendix
Available only for authorised users
Literature
2.
go back to reference The Polaris Observatory Collaborators. Global prevalence, treatment, and prevention of hepatitis B virus Infection in 2016: a modelling study. Lancet Gastroenterol Hepatol. 2018;3(6):383–403.CrossRef The Polaris Observatory Collaborators. Global prevalence, treatment, and prevention of hepatitis B virus Infection in 2016: a modelling study. Lancet Gastroenterol Hepatol. 2018;3(6):383–403.CrossRef
3.
go back to reference Coppola N, Alessio L, Pisaturo M, Macera M, Sagnelli C, Zampino R, et al. Hepatitis B virus Infection in immigrant populations. World J Hepatol. 2015;7(30):2955–61.CrossRefPubMedPubMedCentral Coppola N, Alessio L, Pisaturo M, Macera M, Sagnelli C, Zampino R, et al. Hepatitis B virus Infection in immigrant populations. World J Hepatol. 2015;7(30):2955–61.CrossRefPubMedPubMedCentral
4.
go back to reference Smith-Palmer J, Cerri K, Sbarigia U, Chan EKH, Pollock RF, Valentine WJ, et al. Impact of stigma on people living with chronic hepatitis B. Patient Relat Outcome Meas. 2020;11:95–107.CrossRefPubMedPubMedCentral Smith-Palmer J, Cerri K, Sbarigia U, Chan EKH, Pollock RF, Valentine WJ, et al. Impact of stigma on people living with chronic hepatitis B. Patient Relat Outcome Meas. 2020;11:95–107.CrossRefPubMedPubMedCentral
5.
go back to reference Moraras K, Block J, Shiroma N, Cannizzo A, Cohen C. Protecting the rights of health care students living with hepatitis B under the americans with disabilities act. Public Health Rep. 2020;135(1 Suppl):13S–18S.CrossRefPubMedPubMedCentral Moraras K, Block J, Shiroma N, Cannizzo A, Cohen C. Protecting the rights of health care students living with hepatitis B under the americans with disabilities act. Public Health Rep. 2020;135(1 Suppl):13S–18S.CrossRefPubMedPubMedCentral
6.
go back to reference Mokaya J, McNaughton AL, Burbridge L, Maponga T, O’Hara G, Andersson M, et al. A blind spot? Confronting the stigma of hepatitis B virus (HBV) Infection - a systematic review. Wellcome Open Res. 2018;3:29.CrossRefPubMedPubMedCentral Mokaya J, McNaughton AL, Burbridge L, Maponga T, O’Hara G, Andersson M, et al. A blind spot? Confronting the stigma of hepatitis B virus (HBV) Infection - a systematic review. Wellcome Open Res. 2018;3:29.CrossRefPubMedPubMedCentral
7.
go back to reference McCulloch K, Romero N, MacLachlan J, Allard N, Cowie B. Modeling progress toward elimination of hepatitis B in Australia. Hepatology. 2020;71(4):1170–81.CrossRefPubMed McCulloch K, Romero N, MacLachlan J, Allard N, Cowie B. Modeling progress toward elimination of hepatitis B in Australia. Hepatology. 2020;71(4):1170–81.CrossRefPubMed
8.
go back to reference Wallace J, McNally S, Richmond J, Hajarizadeh B, Pitts M. Managing chronic Hepatitis B: a qualitative study exploring the perspectives of people living with chronic hepatitis B in Australia. BMC Res Notes. 2011;4: 45.CrossRefPubMedPubMedCentral Wallace J, McNally S, Richmond J, Hajarizadeh B, Pitts M. Managing chronic Hepatitis B: a qualitative study exploring the perspectives of people living with chronic hepatitis B in Australia. BMC Res Notes. 2011;4: 45.CrossRefPubMedPubMedCentral
9.
go back to reference Corrigan PW, Rao D. On the self-stigma of mental illness: stages, disclosure, and strategies for change. Can J Psychiatry. 2012;57(8):464–9.CrossRefPubMed Corrigan PW, Rao D. On the self-stigma of mental illness: stages, disclosure, and strategies for change. Can J Psychiatry. 2012;57(8):464–9.CrossRefPubMed
11.
go back to reference Jin D, Treloar C, Brener L. Hepatitis B virus related stigma among Chinese living in mainland China: a scoping review. Psychol Health Med. 2022;27(8):1760–73. Jin D, Treloar C, Brener L. Hepatitis B virus related stigma among Chinese living in mainland China: a scoping review. Psychol Health Med. 2022;27(8):1760–73.
13.
go back to reference Huang J, Guan ML, Balch J, Wu E, Rao H, Lin A, et al. Survey of hepatitis B knowledge and stigma among chronically infected patients and uninfected persons in Beijing, China. Liver Int. 2016;36(11):1595–603.CrossRefPubMed Huang J, Guan ML, Balch J, Wu E, Rao H, Lin A, et al. Survey of hepatitis B knowledge and stigma among chronically infected patients and uninfected persons in Beijing, China. Liver Int. 2016;36(11):1595–603.CrossRefPubMed
14.
go back to reference Freeland C, Farrell S, Kumar P, Kamischke M, Jackson M, Bodor S, et al. Common concerns, barriers to care, and the lived experience of individuals with hepatitis B: a qualitative study. BMC Public Health. 2021;21(1):1004.CrossRefPubMedPubMedCentral Freeland C, Farrell S, Kumar P, Kamischke M, Jackson M, Bodor S, et al. Common concerns, barriers to care, and the lived experience of individuals with hepatitis B: a qualitative study. BMC Public Health. 2021;21(1):1004.CrossRefPubMedPubMedCentral
15.
go back to reference Han B, Yuan Q, Shi Y, Wei L, Hou J, Shang J, et al. The experience of discrimination of individuals living with chronic hepatitis B in four provinces of China. PLoS One. 2018;13(4):e0195455.CrossRefPubMedPubMedCentral Han B, Yuan Q, Shi Y, Wei L, Hou J, Shang J, et al. The experience of discrimination of individuals living with chronic hepatitis B in four provinces of China. PLoS One. 2018;13(4):e0195455.CrossRefPubMedPubMedCentral
16.
go back to reference Wallace J, Pitts M, Liu C, Lin V, Hajarizadeh B, Richmond J, et al. More than a virus: a qualitative study of the social implications of hepatitis B infection in China. Int J Equity Health. 2017;16(1):137.CrossRefPubMedPubMedCentral Wallace J, Pitts M, Liu C, Lin V, Hajarizadeh B, Richmond J, et al. More than a virus: a qualitative study of the social implications of hepatitis B infection in China. Int J Equity Health. 2017;16(1):137.CrossRefPubMedPubMedCentral
17.
go back to reference Tu T, Block JM, Wang S, Cohen C, Douglas MW. The lived experience of chronic hepatitis B: a broader view of its impacts and why we need a cure. Viruses. 2020;12(5):515.CrossRefPubMedPubMedCentral Tu T, Block JM, Wang S, Cohen C, Douglas MW. The lived experience of chronic hepatitis B: a broader view of its impacts and why we need a cure. Viruses. 2020;12(5):515.CrossRefPubMedPubMedCentral
18.
go back to reference Vogel DL, Bitman RL, Hammer JH, Wade NG. Is stigma internalized? The longitudinal impact of public stigma on self-stigma. J Couns Psychol. 2013;60(2):311–6.CrossRefPubMed Vogel DL, Bitman RL, Hammer JH, Wade NG. Is stigma internalized? The longitudinal impact of public stigma on self-stigma. J Couns Psychol. 2013;60(2):311–6.CrossRefPubMed
19.
go back to reference Corrigan PW, Kerr A, Knudsen L. The stigma of mental illness: explanatory models and methods for change. Appl Prev Psychol. 2005;11(3):179–90.CrossRef Corrigan PW, Kerr A, Knudsen L. The stigma of mental illness: explanatory models and methods for change. Appl Prev Psychol. 2005;11(3):179–90.CrossRef
20.
go back to reference Valizadeh L, Zamanzadeh V, Bayani M, Zabihi A. The social stigma experience in patients with hepatitis B infection: a qualitative study. Gastroenterol Nurs. 2017;40(2):143–50.CrossRefPubMed Valizadeh L, Zamanzadeh V, Bayani M, Zabihi A. The social stigma experience in patients with hepatitis B infection: a qualitative study. Gastroenterol Nurs. 2017;40(2):143–50.CrossRefPubMed
21.
go back to reference Le TV, Vu TTM, Mai HT, Nguyen LH, Truong NT, Hoang CL, et al. Social determinants of stigma and discrimination in Vietnamese patients with chronic hepatitis B. Int J Environ Res Public Health. 2019;16(3):398.CrossRefPubMedPubMedCentral Le TV, Vu TTM, Mai HT, Nguyen LH, Truong NT, Hoang CL, et al. Social determinants of stigma and discrimination in Vietnamese patients with chronic hepatitis B. Int J Environ Res Public Health. 2019;16(3):398.CrossRefPubMedPubMedCentral
22.
23.
go back to reference Li D, Tang T, Patterson M, Ho M, Heathcote J, Shah H. The impact of hepatitis B knowledge and stigma on screening in Canadian Chinese persons. Can J Gastroenterol. 2012;26(9):597–602.CrossRefPubMedPubMedCentral Li D, Tang T, Patterson M, Ho M, Heathcote J, Shah H. The impact of hepatitis B knowledge and stigma on screening in Canadian Chinese persons. Can J Gastroenterol. 2012;26(9):597–602.CrossRefPubMedPubMedCentral
24.
go back to reference Wallace J, McNally S, Richmond J, Hajarizadeh B, Pitts M. Challenges to the effective delivery of health care to people with chronic hepatitis B in Australia. Sex Health. 2012;9(2):131–7.CrossRefPubMed Wallace J, McNally S, Richmond J, Hajarizadeh B, Pitts M. Challenges to the effective delivery of health care to people with chronic hepatitis B in Australia. Sex Health. 2012;9(2):131–7.CrossRefPubMed
26.
go back to reference Sarin SK, Kumar M, Lau GK, Abbas Z, Chan HL, Chen CJ, et al. Asian-pacific clinical practice guidelines on the management of hepatitis B: a 2015 update. Hepatol Int. 2016;10(1):1–98.CrossRefPubMed Sarin SK, Kumar M, Lau GK, Abbas Z, Chan HL, Chen CJ, et al. Asian-pacific clinical practice guidelines on the management of hepatitis B: a 2015 update. Hepatol Int. 2016;10(1):1–98.CrossRefPubMed
27.
go back to reference Lok AS, Zoulim F, Dusheiko G, Ghany MG. Hepatitis B cure: from discovery to regulatory approval. Hepatology. 2017;66(4):1296–313.CrossRefPubMed Lok AS, Zoulim F, Dusheiko G, Ghany MG. Hepatitis B cure: from discovery to regulatory approval. Hepatology. 2017;66(4):1296–313.CrossRefPubMed
29.
go back to reference Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, et al. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research practices Task Force report: part 2—assessing respondent understanding. Value Health. 2011;14(8):978–88.CrossRefPubMed Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, et al. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research practices Task Force report: part 2—assessing respondent understanding. Value Health. 2011;14(8):978–88.CrossRefPubMed
30.
go back to reference Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3(2):77–101.CrossRef Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3(2):77–101.CrossRef
31.
go back to reference Guest G, MacQueen KM, Namey EE. Applied thematic analysis. Thousand Oaks: Sage; 2012.CrossRef Guest G, MacQueen KM, Namey EE. Applied thematic analysis. Thousand Oaks: Sage; 2012.CrossRef
32.
go back to reference Fusch PI, Ness LR. Are we there yet? Data saturation in qualitative research. Qual Rep. 2015;20(9):1408–16. Fusch PI, Ness LR. Are we there yet? Data saturation in qualitative research. Qual Rep. 2015;20(9):1408–16.
33.
go back to reference Choi HSJ, Tonthat A, Janssen HLA, Terrault NA. Aiming for functional cure with established and novel therapies for chronic hepatitis B. Hepatol Commun. 2022;6(5):935–49.CrossRefPubMed Choi HSJ, Tonthat A, Janssen HLA, Terrault NA. Aiming for functional cure with established and novel therapies for chronic hepatitis B. Hepatol Commun. 2022;6(5):935–49.CrossRefPubMed
35.
go back to reference Wallace J, Richmond J, Allard N, Howell J, Adamson E, Xiao Y, et al. Facilitating hepatitis B clinical management in general practice: a qualitative investigation. Aust J Gen Pract. 2020;49(9):599–604.CrossRefPubMed Wallace J, Richmond J, Allard N, Howell J, Adamson E, Xiao Y, et al. Facilitating hepatitis B clinical management in general practice: a qualitative investigation. Aust J Gen Pract. 2020;49(9):599–604.CrossRefPubMed
36.
go back to reference Ishimaru T, Wada K, Arphorn S, Smith DR. Barriers to the acceptance of work colleagues infected with hepatitis B and hepatitis C in Japan. J Occup Health. 2016;58(3):269–75.CrossRefPubMedPubMedCentral Ishimaru T, Wada K, Arphorn S, Smith DR. Barriers to the acceptance of work colleagues infected with hepatitis B and hepatitis C in Japan. J Occup Health. 2016;58(3):269–75.CrossRefPubMedPubMedCentral
37.
go back to reference Eguchi H, Wada K. Knowledge of HBV and HCV and individuals’ attitudes toward HBV- and HCV-infected colleagues: a national cross-sectional study among a working population in Japan. PLoS One. 2013;8(9):e76921.ADSCrossRefPubMedPubMedCentral Eguchi H, Wada K. Knowledge of HBV and HCV and individuals’ attitudes toward HBV- and HCV-infected colleagues: a national cross-sectional study among a working population in Japan. PLoS One. 2013;8(9):e76921.ADSCrossRefPubMedPubMedCentral
38.
go back to reference Freeland C, Racho R, Kamischke M, Moraras K, Wang E, Cohen C. Cure everyone and vaccinate the rest: the patient perspective on future hepatitis B treatment. J Viral Hepat. 2021;28(11):1539–44.CrossRefPubMed Freeland C, Racho R, Kamischke M, Moraras K, Wang E, Cohen C. Cure everyone and vaccinate the rest: the patient perspective on future hepatitis B treatment. J Viral Hepat. 2021;28(11):1539–44.CrossRefPubMed
Metadata
Title
Experience and impact of stigma in people with chronic hepatitis B: a qualitative study in Asia, Europe, and the United States
Authors
Mondher Toumi
Jack Wallace
Chari Cohen
Chris Marshall
Helen Kitchen
Jake Macey
Hannah Pegram
Ashley F. Slagle
Robert G. Gish
Qin Ning
Hiroshi Yatsuhashi
Markus Cornberg
Maurizia Brunetto
Florian van Bömmel
Qing Xie
Dee Lee
Noriyuki Habuka
Urbano Sbarigia
Maria Beumont-Mauviel
Angelina Villasis Keever
Yasushi Takahashi
Yiwei Lu
Ao Liu
Qiaoqiao Chen
Tetsuro Ito
Olaf Radunz
Anna Puggina
Gudrun Hilgard
Eric K.H. Chan
Su Wang
Publication date
01-12-2024
Publisher
BioMed Central
Keyword
Hepatitis B
Published in
BMC Public Health / Issue 1/2024
Electronic ISSN: 1471-2458
DOI
https://doi.org/10.1186/s12889-023-17263-6

Other articles of this Issue 1/2024

BMC Public Health 1/2024 Go to the issue