Health Information Behavior in Parents of Children With Congenital Heart Disease in China: Qualitative Study Through the Lens of Chinese Culture

Abstract

Background: Parents of children with congenital heart disease (CHD) serve as primary caregivers and play a central role in decisions regarding their children's health care, development, and overall well-being. Their health information behavior directly influences the care decisions and outcomes of their children. In China, the online health information environment is vast but varies in quality, which places a significant information-seeking burden on them in the digital age. Moreover, Chinese cultural backgrounds shape parents' views, perspectives, and practices related to health information. To date, there have been no studies in China reporting on the experiences of parents of children with CHD concerning their health information behavior.

Objective: The aim of this study was to explore the experiences of health information behavior among parents of children with CHD during the disease journey through the lens of Chinese culture.

Methods: This study used a descriptive phenomenological qualitative method. Face-to-face, semistructured, and in-depth interviews were conducted with parents of children with CHD from March to July 2025 at a tertiary grade A hospital located in Kunming, Yunnan Province, China. Data were collected and managed using the NVivo 12.0 software (QSR International), and thematic analysis was applied to identify and interpret participants' experiences and perspectives.

Results: A total of 24 parents of children with CHD participated in this study, including 6 fathers and 18 mothers. In total, 6 themes emerged from the data: (1) Looking for health information both online and offline; (2) Seeking health information from professionals and peers as well; (3) Evolving health information needs in the disease journey; (4) Showing diverse attitudes toward health information seeking; (5) Positive and negative feelings during health information behavior process; and (6) Disclosure versus concealment of children's disease information.

Conclusions: Parents of children with CHD seek health information from both online and offline sources and also combine health information from professionals and peers. Medical institutions should provide authoritative information resources, while regulatory authorities should conduct professional reviews before disseminating health information online to foster a reliable information environment. Additional efforts should focus on utilizing rehabilitation narratives from peer networks, delivering personalized information support tailored to parents' information-seeking styles and children's disease stages, and offering training and services to stimulate and cultivate a conscious decision-making process regarding disease disclosure and sharing.

Keywords: information seeking; congenital heart disease; experiences; health information behavior; online; parents; qualitative study.