Keywords
hepatitis B
family caregivers
health information seeking
Xiaohongshu
topic modeling
BERTopic
Abstract
China accounts for approximately 50% of global new liver cancer cases, predominantly driven by hepatitis B virus (HBV)-related hepatocellular carcinoma. The disease presents a distinctive socio-medical profile characterized by a prolonged etiological chain (chronic hepatitis B—cirrhosis—liver cancer), late-stage diagnosis, and a cultural norm of family-first disclosure—whereby physicians typically inform family members before patients themselves. These features position family caregivers, rather than patients, as the primary information seekers and communicators in online health discourse. Drawing on the Comprehensive Model of Information Seeking (CMIS) and Communication Privacy Management (CPM) theory, this study analyzes 1,857 liver cancer-related user comments collected from Xiaohongshu (Little Red Book)—a Chinese lifestyle-oriented social media platform with over 300 million monthly active users—between December 2024 and February 2026. BERTopic, a neural topic modeling framework suited to short Chinese social media texts, was employed for inductive topic extraction. The analysis yielded 15 interpretable topics, organized into five thematic categories: clinical diagnosis and treatment (34.8%), emotional support and caregiving (26.3%), upstream chronic disease management (14.2%), symptom and tumor assessment (12.5%), and online health consultation (9.6%). Notably, hepatitis B and cirrhosis medication management emerged as the second-largest topic, directly mirroring the HBV-dominant etiological chain characteristic of Chinese liver cancer. Family-role terms ("father," "mother," "husband") and Buddhist prayer language appeared as high-salience keywords across multiple topics, underscoring the caregiver-driven and culturally embedded nature of the discourse. The study proposes the concept of "proxy information seeker" as a theoretical extension of CMIS, reveals privacy boundary tensions arising from caregivers' routine public disclosure of patient health information under China's non-disclosure culture, and provides empirical grounding for caregiver-oriented platform governance and digital health literacy interventions.
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