Experience and impact of stigma in people with chronic hepatitis B: a qualitative study in Asia, Europe, and the United States.
Chronic Hepatitis B
Functional cure
Hepatitis B virus
Qualitative research
Self-stigma
Social impact
Journal
BMC public health
ISSN: 1471-2458
Titre abrégé: BMC Public Health
Pays: England
ID NLM: 100968562
Informations de publication
Date de publication:
26 Feb 2024
26 Feb 2024
Historique:
received:
26
07
2022
accepted:
19
11
2023
medline:
27
2
2024
pubmed:
27
2
2024
entrez:
26
2
2024
Statut:
epublish
Résumé
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. 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. 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. 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.
Sections du résumé
BACKGROUND
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
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
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
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.
Identifiants
pubmed: 38408941
doi: 10.1186/s12889-023-17263-6
pii: 10.1186/s12889-023-17263-6
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
611Informations de copyright
© 2024. The Author(s).
Références
World Health Organization, Hepatitis B. 2021. https://www.who.int/en/news-room/fact-sheets/detail/hepatitis-b . Accessed 20 Jul 2022.
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.
doi: 10.1016/S2468-1253(18)30056-6
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.
doi: 10.4254/wjh.v7.i30.2955
pubmed: 26730274
pmcid: 4691698
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.
doi: 10.2147/PROM.S226936
pubmed: 32214859
pmcid: 7082540
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.
doi: 10.1177/0033354920921252
pubmed: 32735187
pmcid: 7407047
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.
doi: 10.12688/wellcomeopenres.14273.1
pubmed: 30483598
pmcid: 6234740
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.
doi: 10.1002/hep.30899
pubmed: 31419332
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.
doi: 10.1186/1756-0500-4-45
pubmed: 21371332
pmcid: 3060129
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.
doi: 10.1177/070674371205700804
pubmed: 22854028
Hepatitis B Foundation. The voice of the patient: living with chronic hepatitis B. Report of an externally-led patient-focused drug development meeting. 2020. https://www.hepb.org/assets/Uploads/ExPFDD-Report-HBF-10-1-2020.pdf . Accessed 20 Jul 2022.
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.
Ainsworth C. Destigmatizing hepatitis B. Nature. 2022;603(7903):54–6.
doi: 10.1038/d41586-022-00816-x
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.
doi: 10.1111/liv.13168
pubmed: 27206379
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.
doi: 10.1186/s12889-021-11093-0
pubmed: 34044808
pmcid: 8161662
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.
doi: 10.1371/journal.pone.0195455
pubmed: 29649232
pmcid: 5896961
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.
doi: 10.1186/s12939-017-0637-4
pubmed: 28764768
pmcid: 5540563
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.
doi: 10.3390/v12050515
pubmed: 32392763
pmcid: 7290920
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.
doi: 10.1037/a0031889
pubmed: 23421775
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.
doi: 10.1016/j.appsy.2005.07.001
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.
doi: 10.1097/SGA.0000000000000223
pubmed: 28362662
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.
doi: 10.3390/ijerph16030398
pubmed: 30708943
pmcid: 6388214
Liu K. Hepatitis B infection in China: the stigma behind the stigmata. Liver Int. 2016;36(11):1582–4.
doi: 10.1111/liv.13189
pubmed: 27744655
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.
doi: 10.1155/2012/705094
pubmed: 22993729
pmcid: 3441165
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.
doi: 10.1071/SH10137
pubmed: 22498156
World Hepatitis Alliance. Holding governments accountable. World Hepatitis Alliance Civil Society Survey: global findings report. 2017. https://www.worldhepatitisalliance.org/wp-content/uploads/2017/10/holding_governments_accountable_-_civil_society_survey_report.pdf . Accessed 20 Jul 2022.
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.
doi: 10.1007/s12072-015-9675-4
pubmed: 26563120
Lok AS, Zoulim F, Dusheiko G, Ghany MG. Hepatitis B cure: from discovery to regulatory approval. Hepatology. 2017;66(4):1296–313.
doi: 10.1002/hep.29323
pubmed: 28762522
US Food & Drug Administration. Plan for issuance of patient-focused drug development guidance under 21st Century Cures Act Title III Section 3002. 2017. https://www.fda.gov/files/about%20fda/published/Plan-for-Issuance-of-Patient%E2%80%90Focused-Drug-Development-Guidance.pdf . Accessed 20 Jul 2022.
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.
doi: 10.1016/j.jval.2011.06.013
pubmed: 22152166
Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3(2):77–101.
doi: 10.1191/1478088706qp063oa
Guest G, MacQueen KM, Namey EE. Applied thematic analysis. Thousand Oaks: Sage; 2012.
doi: 10.4135/9781483384436
Fusch PI, Ness LR. Are we there yet? Data saturation in qualitative research. Qual Rep. 2015;20(9):1408–16.
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.
doi: 10.1002/hep4.1875
pubmed: 34894108
Wallace J, Pitts M, Liu C, Lin V, Wei L, Hajarizadeh B, et al. Needs assessment of people with viral hepatitis – China. 2015. https://www.researchgate.net/profile/Jack-Wallace-3/publication/280721610_Needs_assessment_of_people_with_viral_hepatitis_China/links/55c2bc5008aebc967defe1d6/Needs-assessment-of-people-with-viral-hepatitis-China.pdf . Accessed 20 Jul 2022.
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.
doi: 10.31128/AJGP-02-20-5225
pubmed: 32864675
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.
doi: 10.1539/joh.15-0288-OA
pubmed: 27108645
pmcid: 5356951
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.
doi: 10.1371/journal.pone.0076921
pubmed: 24086765
pmcid: 3784392
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.
doi: 10.1111/jvh.13592
pubmed: 34363715