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. 2021 May 28;21(1):1004.
doi: 10.1186/s12889-021-11093-0.

Common concerns, barriers to care, and the lived experience of individuals with hepatitis B: a qualitative study

Catherine Freeland  1   2 , Sean Farrell  3   4 , Priyanka Kumar  3   5 , Maureen Kamischke  6 , Michaela Jackson  6 , Sierra Bodor  6 , Timothy M Block  6 , Rosemary Frasso  3 , Chari Cohen  6
Affiliations

Common concerns, barriers to care, and the lived experience of individuals with hepatitis B: a qualitative study

Catherine Freeland et al. BMC Public Health. .

Abstract

Background: An estimated between 257 and 292 million people live with chronic HBV globally. While much is known about the causes, and epidemiology of HBV, little is understood about the quality of life and impact of HBV on those living with the infection.

Methods: A random sample of HBV-related email queries sent to the Hepatitis B Foundation, a U.S.-based non-profit organization, over a 12-month period in 2018-2019 were retrieved, tabulated, and analyzed qualitatively to highlight information needs and explore the experiences of people living with HBV and their families and loved ones. Codebook development was informed by the literature and through line-by-line reading of a sub-sample of queries. Data analysis was facilitated by NVivo12 software. Data were coded independently by two members of the research team and intercoder reliability was assessed to assure coding accuracy throughout the coding phase.

Results: A total of 338 queries from people around the globe were identified and analyzed. The analysis revealed three thematic groups: 1) health-specific challenges associated with diagnosis and treatment, 2) emotional needs related to experiences with HBV stigma, discrimination, fear, social isolation, and distress and 3) informational needs related to HBV prevention and transmission, and interpretation of laboratory tests.

Conclusions: People living with HBV are in need of information to manage their disease and prevent its spread. Analysis of queries uncovered significant misconceptions about HBV transmission and treatment. Additionally, the emotional and psychological impact of an HBV diagnosis on those living with the infection is significant. There is a clear need for patient and community education to expand knowledge and awareness of HBV globally to achieve 2030 WHO HBV elimination goals.

Keywords: Discrimination; Hepatocellular carcinoma; Patient experience; Patient outcomes; Quality of life; Stigma; Viral hepatitis.

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Conflict of interest statement

The authors have no financial conflicts of interest to report or competing interests that would alter findings reported within this study.

Figures

Fig. 1
Fig. 1
The sampling strategy for queries received to the Hepatitis B Foundation between 2018 and 2019
Fig. 2
Fig. 2
Geographic representation of the queries received between 2018 and 2019 by the Hepatitis B Foundation from those affected by hepatitis B
Fig. 3
Fig. 3
Ecological model demonstrating the interconnection between overarching themes 1) informational needs associated with prevention and transmission of HBV and laboratory and test interpretation; 2) health-specific challenges associated with diagnosis and treatment and 3) emotional impact related to experiences with HBV stigma, discrimination, and the fear, social isolation and distress after diagnosis from a sample of queries from individuals living with HBV
See this image and copyright information in PMC

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