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Open Access 01-12-2021 | Hepatitis B | Research

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

Authors: Catherine Freeland, Sean Farrell, Priyanka Kumar, Maureen Kamischke, Michaela Jackson, Sierra Bodor, Timothy M. Block, Rosemary Frasso, Chari Cohen

Published in: BMC Public Health | Issue 1/2021

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.

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Title: Common concerns, barriers to care, and the lived experience of individuals with hepatitis B: a qualitative study
Authors: Catherine Freeland
Sean Farrell
Priyanka Kumar
Maureen Kamischke
Michaela Jackson
Sierra Bodor
Timothy M. Block
Rosemary Frasso
Chari Cohen
Publication date: 01-12-2021
Publisher: BioMed Central
Keywords: Hepatitis B
Hepatitis
Hepatocellular Carcinoma
Hepatocellular Carcinoma
Anxiety
Published in: BMC Public Health / Issue 1/2021
Electronic ISSN: 1471-2458
DOI: https://doi.org/10.1186/s12889-021-11093-0

Keynote webinar | Spotlight on medication adherence

Springer Medicine

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

Abstract

Background

Methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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