Preoperative information burden among parents of children with congenital heart disease: a qualitative study of information access, understanding, and decision-making

BackgroundParents of children with congenital heart disease must understand complex clinical information, navigate referral and practical barriers, and make treatment decisions on behalf of their child. Information burden may therefore reflect not only information quantity but also whether information is understandable, trustworthy, accessible, and actionable.MethodsA qualitative descriptive study was conducted at a tertiary paediatric cardiac centre in China. Twelve parents completed individual face-to-face semi-structured interviews. Purposive sampling sought variation in education, residence, and treatment pathway. Sample adequacy was guided by information power, and recruitment ceased when later interviews no longer altered the main analytic categories or theme boundaries. Data were analysed using the Framework Method, combining within-case timelines with cross-case comparison. Reporting followed the Consolidated Criteria for Reporting Qualitative Research (COREQ).ResultsFour interacting themes were developed: threat before understanding; navigating fragmented information pathways; difficulty translating information into child-specific decisions; and information shaping family adaptation and treatment decisions. Parents described technical language, conflicting recommendations, changing findings, non-comparable digital stories, referral barriers, and cost uncertainty. They valued staged plain-language explanations, visual and written materials, explicit monitoring thresholds, a reliable route for clarification, verified digital information, and practical navigation.ConclusionPreoperative information burden was driven less by information volume than by difficulty translating fragmented clinical, digital, and practical information into a trusted, child-specific course of action. Public health and paediatric services should treat communication, health-information access, and navigation as connected parts of a family-centred pathway rather than as isolated educational tasks.