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

BMC Public Health

Maureen Kamischke¹  Michaela Jackson¹  Sierra Bodor¹  Timothy M. Block¹  Chari Cohen¹  Catherine Freeland²  Rosemary Frasso³  Sean Farrell⁴  Priyanka Kumar⁵ 

[1] Hepatitis B Foundation, 3805 Old Easton Rd, 18902, Doylestown, PA, USA;Hepatitis B Foundation, 3805 Old Easton Rd, 18902, Doylestown, PA, USA;Thomas Jefferson University College of Population Health, 19107, Philadelphia, PA, USA;Thomas Jefferson University College of Population Health, 19107, Philadelphia, PA, USA;Thomas Jefferson University College of Population Health, 19107, Philadelphia, PA, USA;Geisinger Commonwealth School of Medicine in Scranton, 18510, Philadelphia, PA, USA;Thomas Jefferson University College of Population Health, 19107, Philadelphia, PA, USA;Sidney Kimmel Medical College, Thomas Jefferson University, 19107, Philadelphia, PA, USA;

关键词: Viral hepatitis;    Patient outcomes;    Hepatocellular carcinoma;    Patient experience;    Stigma;    Discrimination;    Quality of life;   

DOI  :  10.1186/s12889-021-11093-0

来源: Springer

【 摘 要 】

BackgroundAn 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.MethodsA 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.ResultsA 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.ConclusionsPeople 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.

【 授权许可】

CC BY