What This Means
This study interviewed twelve parents of children with congenital heart disease at a large children's heart centre in China, asking about their experiences of getting and understanding information before their child's surgery or treatment. The researchers identified four connected themes: parents felt threatened by the diagnosis before they understood it; they had to navigate scattered sources of information; they struggled to apply general information to their own child's situation; and the information they had shaped how their family coped and how they made treatment decisions.
Parents described technical language, conflicting advice, test findings that changed over time, online stories from other families that were hard to compare to their own, difficulty with referrals, and uncertainty about costs. They said it helped to receive explanations in stages and in plain language, to have visual and written materials, to be told clear thresholds for what to watch for, to have a reliable way to ask questions, to have verified online information, and to get practical help navigating the system.
This research suggests that the problem for parents is not simply too much information, but information that is fragmented and hard to turn into a trusted plan for their own child. The authors suggest that health services treat communication, access to reliable information, and practical navigation as parts of one family-centred pathway. Because the study was small and based at a single centre, the findings describe these parents' experiences and may not apply to all families.