Hepatitis B (HBV), the leading cause of hepatocellular carcinoma (HCC), disproportionately affects minorities. Compared to other races, Blacks more often present with advanced HCC and have decreased survival. We observed higher HBV-associated HCC rates among Blacks than reported nationally. In our center, Haitian Blacks had the highest rates of HBV-associated HCC and shorter survival compared to other Blacks. We investigated knowledge and perceptions regarding HBV and HCC among Blacks born in the United States or Haiti.
Using community partnerships, participants were recruited via word of mouth, email, social media or from Hepatology clinic. Focus groups were conducted in Haitian Creole or English and stratified by birthplace, gender and infection status. Discussions were audio-recorded and transcribed verbatim. A constant comparative method was used for data analysis; themes are based on conversational details.
There were 55 participants; 49% were male and 27% had chronic HBV. Only 42% of Haitian Blacks knew about HBV prior to participation vs. 78% of African Americans, p 0.03. Both groups expressed that fear, mistrust of the medical establishment, denial and stigma might compel persons to avoid seeking care. Both groups attributed higher rates of late stage HCC diagnosis in Blacks to inadequate financial resources and education. Those with HBV reported confusion regarding their infection and suboptimal communication with healthcare providers.
In two communities disproportionately affected by HBV, misconceptions about disease transmission, stigma, low health literacy and decreased access to care may limit detection for HBV. Culturally relevant community-based interventions are needed to increase HBV detection.
This is a preview of subscription content, access via your institution.
Buy single article
Instant access to the full article PDF.
Price excludes VAT (USA)
Tax calculation will be finalised during checkout.
Acquired immunodeficiency syndrome
Behavioral Community Shared Resource Core
Centers for Disease Control and Prevention
Hepatitis B virus
Hepatitis C virus
Department of Health and Human Services
Human immunodeficiency virus
Short Assessment of Health Literacy
White DL, Thrift AP, Kanwal F, Davila J, El-Serag HB (2017) Incidence of hepatocellular carcinoma in all 50 United States, from 2000 through 2012. Gastroenterology 152(4):812–820. https://doi.org/10.1053/j.gastro.2016.11.020
Rahib L, Smith BD, Aizenberg R, Rosenzweig AB, Fleshman JM, Matrisian LM (2014) Projecting cancer incidence and deaths to 2030: the unexpected burden of thyroid, liver, and pancreas cancers in the United States. Cancer Res 74(11):2913–2921. https://doi.org/10.1158/0008-5472.CAN-14-0155
Kulik L, El-Serag HB (2018) Epidemiology and management of hepatocellular carcinoma. Gastroenterology. https://doi.org/10.1053/j.gastro.2018.08.065
Makarova-Rusher OV, Altekruse SF, McNeel TS et al (2016) Population attributable fractions of risk factors for hepatocellular carcinoma in the United States. Cancer 122(11):1757–1765. https://doi.org/10.1002/cncr.29971
Kim HS, Rotundo L, Yang JD et al (2017) Racial/ethnic disparities in the prevalence and awareness of Hepatitis B virus infection and immunity in the United States. J Viral Hepat 24(11):1052–1066. https://doi.org/10.1111/jvh.12735
Hyun Kim B, Ray KW (2018) Epidemiology of hepatitis B virus infection in the United States. Clin Liver Dis (Hoboken) 12(1):1–4. https://doi.org/10.1002/cld.732
Schweitzer A, Horn J, Mikolajczyk RT, Krause G, Ott JJ (2015) Estimations of worldwide prevalence of chronic hepatitis B virus infection: a systematic review of data published between 1965 and 2013. Lancet. https://doi.org/10.1016/S0140-6736(15)61412-X
https://www.cdc.gov/mmwr/preview/mmwrhtml/mm5125a3.htm. Accessed 8 Oct 2020
https://www.cdc.gov/hepatitis/statistics/2016surveillance/index.htm#tabs-5-1. Accessed 8 Oct 2020
Ioannou GN (2011) Hepatitis B virus in the United States: infection, exposure, and immunity rates in a nationally representative survey. Ann Intern Med 154(5):319–328. https://doi.org/10.7326/0003-4819-154-5-201103010-00006
Roberts H, Kruszon-Moran D, Ly KN et al (2016) Prevalence of chronic hepatitis B virus (HBV) infection in U.S. households: National Health and Nutrition Examination Survey (NHANES), 1988–2012. Hepatology 63(2):388–397. https://doi.org/10.1002/hep.28109
Forde KA (2017) Ethnic disparities in chronic hepatitis B infection: African Americans and hispanic americans. Curr Hepatol Rep 16(2):105–112. https://doi.org/10.1007/s11901-017-0348-8
Tohme RA, Andre-Alboth J, Tejada-Strop A et al (2016) Hepatitis B virus infection among pregnant women in Haiti: a cross-sectional serosurvey. J Clin Virol 76:66–71. https://doi.org/10.1016/j.jcv.2016.01.012
Jones PD, Diaz C, Wang D, Gonzalez-Diaz J, Martin P, Kobetz E (2018) The impact of race on survival after hepatocellular carcinoma in a diverse American population. Dig Dis Sci 63(2):515–528. https://doi.org/10.1007/s10620-017-4869-3
Hu DJ, Xing J, Tohme RA et al (2013) Hepatitis B testing and access to care among racial and ethnic minorities in selected communities across the United States, 2009–2010. Hepatology 58(3):856–862. https://doi.org/10.1002/hep.26286
Chu D, Yang JD, Lok AS et al (2013) Hepatitis B screening and vaccination practices in Asian American primary care. Gut Liver 7(4):450–457. https://doi.org/10.5009/gnl.2013.7.4.450
Mitchell AE, Colvin HM, Palmer BR (2010) Institute of medicine recommendations for the prevention and control of hepatitis B and C. Hepatology 51(3):729–733. https://doi.org/10.1002/hep.23561
Ma GX, Shive SE, Fang CY et al (2007) Knowledge, attitudes, and behaviors of hepatitis B screening and vaccination and liver cancer risks among Vietnamese Americans. J Health Care Poor Underserved 18(1):62–73. https://doi.org/10.1353/hpu.2007.0013
Nishimura A, Shiono P, Stier D, Shallow S, Sanchez M, Huang S (2012) Knowledge of hepatitis B risk factors and prevention practices among individuals chronically infected with hepatitis B in San Francisco, California. J Community Health 37(1):153–158. https://doi.org/10.1007/s10900-011-9430-2
Shah SA, Chen K, Marneni S et al (2015) Hepatitis B awareness and knowledge in hepatitis B surface antigen-positive parturient immigrant women from West Africa in the Bronx, New York. J Immigr Minor Health 17(1):302–305. https://doi.org/10.1007/s10903-013-9914-5
Shiau R, Bove F, Henne J, Zola J, Fang T, Fernyak S (2012) Using survey results regarding hepatitis B knowledge, community awareness and testing behavior among Asians to improve the San Francisco Hep B free campaign. J Community Health 37(2):350–364. https://doi.org/10.1007/s10900-011-9452-9
Bailey MB, Shiau R, Zola J et al (2011) San Francisco hep B free: a grassroots community coalition to prevent hepatitis B and liver cancer. J Community Health 36(4):538–551. https://doi.org/10.1007/s10900-010-9339-1
https://hepfree.nyc/. Accessed 8 Oct 2020
Pollack H, Wang S, Wyatt L et al (2011) A comprehensive screening and treatment model for reducing disparities in hepatitis B. Health Aff (Millwood) 30(10):1974–1983. https://doi.org/10.1377/hlthaff.2011.0700
Robotin MC, George J (2014) Community-based hepatitis B screening: what works? Hepatol Int 8(4):478–492. https://doi.org/10.1007/s12072-014-9562-4
Chandrasekar E, Song S, Johnson M et al (2016) A novel strategy to increase identification of African-born people with chronic hepatitis B virus infection in the Chicago Metropolitan Area, 2012–2014. Prev Chronic Dis 13:E118. https://doi.org/10.5888/pcd13.160162
Shankar H, Blanas D, Bichoupan K et al (2016) A novel collaborative community-based hepatitis B Screening and linkage to care program for African immigrants. Clin Infect Dis 62(Suppl 4):S289–S297. https://doi.org/10.1093/cid/ciw090
SAHL-E Keys for Health Literacy Measurement Tools (2014) Agency for Healthcare Research and Quality R, MD. https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy/sahl-e-keys.html. Accessed 8 Oct 2020
Lee SY, Stucky BD, Lee JY, Rozier RG, Bender DE (2010) Short assessment of health literacy-Spanish and English: a comparable test of health literacy for Spanish and English speakers. Health Serv Res 45(4):1105–1120. https://doi.org/10.1111/j.1475-6773.2010.01119.x
Guest G, Namey E, McKenna K (2017) How many focus groups are enough? Building and evidence base for nonprobability sample sizes. Field Methods 29(1):3–22. https://doi.org/10.1177/1525822X16639015
Desrosiers A, St FS (2002) Treating Haitian patients: key cultural aspects. Am J Psychother 56(4):508–521. https://doi.org/10.1176/appi.psychotherapy.2002.56.4.508
Miller NL (2000) Haitian ethnomedical systems and biomedical practitioners: directions for clinicians. J Transcult Nurs 11(3):204–211. https://doi.org/10.1177/104365960001100307
Jemal A, Fedewa SA (2015) Prevalence of hepatitis C virus testing in cohorts born between 1945 and 1965 in the U.S. Am J Prev Med 48(5):e7–9. https://doi.org/10.1016/j.amepre.2014.12.002
Thompson MJ, Taylor VM, Jackson JC et al (2002) Hepatitis B knowledge and practices among Chinese American women in Seattle, Washington. J Cancer Educ 17(4):222–226. https://doi.org/10.1080/08858190209528842
Walters J, Sullivan A (2016) Early identification and linkage to care of foreign-born people with chronic hepatitis B virus infection, Multnomah County, Oregon, 2012–2014. Public Health Rep 131(Suppl 2):105–111. https://doi.org/10.1177/00333549161310S216
https://www.census.gov/quickfacts/fact/table/miamidadecountyflorida/PST045218. Accessed 8 Oct 2020
Davies J, Bukulatjpi S, Sharma S, Davis J, Johnston V (2014) "Only your blood can tell the story"–a qualitative research study using semi-structured interviews to explore the hepatitis B related knowledge, perceptions and experiences of remote dwelling Indigenous Australians and their health care providers in northern Australia. BMC Public Health 14:1233. https://doi.org/10.1186/1471-2458-14-1233
Blanas DA, Nichols K, Bekele M et al (2015) Adapting the Andersen model to a francophone West African immigrant population: hepatitis B screening and linkage to care in New York City. J Community Health 40(1):175–184. https://doi.org/10.1007/s10900-014-9916-9
https://www.census.gov/content/dam/Census/library/publications/2018/demo/p60-264.pdf. Accessed 8 Oct 2020
https://www.census.gov/quickfacts/fact/table/miamidadecountyflorida/POP060210. Accessed 8 Oct 2020
The authors acknowledge members of the Behavioral and Community-Based Research Shared Resource for assisting with study recruitment and moderation of focus groups.
The salary of the corresponding author is partially supported by a Diversity Supplement awarded by the National Institutes of Health (NIH) National Institute on Minority Health and Health Disparities (U01MD010614-01S1). The NIH was not involved in study design or in the collection, analysis or interpretation of data. Further, the NIH did not contribute to the writing of this manuscript or decision to submit for publication. Study procedures and patient incentives were made possible by the Sylvester Catchment Center Grant awarded to the corresponding author in 2016.
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Electronic supplementary material
Below is the link to the electronic supplementary material.
About this article
Cite this article
Jones, P., Soler, J., Solle, N.S. et al. A mixed-methods approach to understanding perceptions of hepatitis B and hepatocellular carcinoma among ethnically diverse Black communities in South Florida. Cancer Causes Control 31, 1079–1091 (2020). https://doi.org/10.1007/s10552-020-01345-6