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

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.

Needs of Individuals Living With Hepatitis Delta Virus and Their Caregivers, 2016-2019.

INTRODUCTION: Hepatitis delta virus (HDV) is a serious coinfection of the hepatitis B virus (HBV) that is estimated to affect between 48 to 72 million people worldwide. Data are limited on the informational needs of people living with HDV. The Hepatitis B Foundation, a US-based nonprofit organization that provides support to people living with HBV and HDV, receives emails (queries) as part of a helpline, a service to provide information, resources, and support to people affected by HBV and HDV. METHODS: Query content was analyzed to assess the impact of HDV at the individual level. A total of 65 HDV-related queries from 17 countries were received from October 2016 to January 2019, and all were analyzed for this study. RESULTS: Thematic analysis of queries indicated 4 dominant themes. Three were related to a need for information about 1) the disease and prevention of it, 2) disease symptoms and outcomes, and 3) treatment options. The fourth theme was related to barriers and quality of life. Individuals requested information on treatment options, medication access, diagnostic test interpretation, and clinical trials. CONCLUSION: Our study highlights the needs and lived experience of patients with HDV and summarizes critical information gaps. Findings can inform health care providers, public health professionals, and the pharmaceutical and biotechnology industries about the informational needs and lived experiences of individuals living with HDV and help create future HDV-related educational resources, care, and clinical trials.

Barriers to Hepatitis B Screening and Prevention for African Immigrant Populations in the United States: A Qualitative Study.

Chronic hepatitis B infection (HBV) disproportionately affects African Immigrant (AI) communities in the U.S., with a reported infection rate of 15%. HBV screening rates within these communities are low. This study sought to better understand the socio-cultural determinants associated with low HBV screening among AI communities and identify potential strategies to help inform the development of effective HBV education and screening interventions. Seventeen in-depth interviews were conducted with community health experts working in AI communities throughout the U.S. Interviews explored the potential impact of culture, perception of health, awareness of HBV, religious practices, current screening practice, provider relationship, and behaviors towards general prevention. Interview data were analyzed using thematic analysis. Religious preferences and cultural norms affect health care access, perceptions towards prevention, awareness of HBV, and contribute to myths and stigma within this population. Participants reported a lack of HBV knowledge and awareness and barriers to health care access including, cost, language, racism, understanding of Western Medicine, and usage of traditional medicine. This study elucidates the role of religious and cultural beliefs as barriers to HBV screening and care. Results can contribute to public health efforts to increase awareness, screening and vaccination efforts within AI communities.