The unvirtuous cycle of discrimination affecting people with hepatitis B: a multi-country qualitative assessment of key-informant perspectives
- PMID: 35642059
- PMCID: PMC9158347
- DOI: 10.1186/s12939-022-01677-6
The unvirtuous cycle of discrimination affecting people with hepatitis B: a multi-country qualitative assessment of key-informant perspectives
Abstract
Background: An estimated 296 million individuals live with chronic hepatitis B worldwide, most have not been diagnosed and remain at risk of liver disease and cancer. People with hepatitis B often face discrimination that denies them employment or education opportunities, results in unfair treatment at work or in school, limits their ability to emigrate to certain countries, and in some cases prohibits them from serving in the military. Discrimination specific to hepatitis B has not been widely documented within the literature. This study aims to investigate and describe hepatitis B related discrimination, document discrimination occurring around the globe, and provide initial recommendations for addressing discrimination using key informant interviews.
Methods: Purposive and snowball sampling were used to identify potential key informants for qualitative interview. Key informants identified as community health leaders, public health scientists, doctors, and researchers, many of whom were also living with hepatitis B. Using a semi-structured guide, participants were asked to describe their experience and any challenges for people living with hepatitis B including marginalization and its' consequences. A codebook was used to guide the organization of data for analysis, and all transcripts N = 17 were double coded.
Results: The overarching themes identified from interviews demonstrate explicit experiences with discrimination of those directly affected, the psychological responses, and the negative health outcomes associated with the unvirtuous cycle of discrimination. All key informants reported on the substantial quality of life implications and often poorer health outcomes resulting from hepatitis B discrimination. Participants also identified the significant impact of hepatitis B discrimination occurring within a range of education-based services across several countries as well as military exclusion or removal if individuals are found to have hepatitis B.
Conclusion: Our data demonstrate that hepatitis B discrimination has a significant impact. Discrimination can occur at various points in life from education, to seeking employment, to marriage, to restrictions on entry, travel and stay in other countries. This study demonstrates the impact of discrimination and the need for future research that can lead to policy change and protections for people living with and impacted by hepatitis B.
Keywords: Discrimination; Health outcomes; Hepatitis B virus; Human rights; Liver cancer; Marginalization; Stigma.
© 2022. The Author(s).
Conflict of interest statement
The Hepatitis B Foundation receives independent grants for public health programming, outreach and education from: Gilead Sciences, VBI Vaccines, Dynavax Technologies, Arbutus Biopharma, Janssen, GSK, BMS, and Antios. Chari Cohen serves on community advisory boards for Gilead Sciences and GSK. Lindsay Mendola is currently employed with GSK. VC, JW, and CF have no competing interests to disclose.
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References
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- WHO . Global Progress Report on HIV, Viral Hepatitis and Sexually Transmitted Infections, 2021. . 2021.
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- Polaris Observatory Collaborators D, Gamkrelidze I, Nguyen MH, et al. Global prevalence, treatment, and prevention of hepatitis B virus infection in 2016: a modelling study. lancet Gastroenterol Hepatol. 2018;3(6):383–403. 10.1016/S2468-1253(18)30056-6 - PubMed
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