Department of Cardiology, Boston Children's Hospital, 300 Longwood Avenue, Boston, MA, 02115, USA.
Department of Psychiatry, Boston Children's Hospital, Boston, MA, USA.
Pediatr Cardiol. 2022 Dec;43(8):1761-1769. doi: 10.1007/s00246-022-02913-0. Epub 2022 May 10.
Communication between parents and providers of children with cardiac disease is essential to parental decision-making. This study explored how parents of hospitalized children with advanced heart disease perceived communication with their child's providers. We performed a prospective survey study of parents and physicians of children with advanced heart disease age 30 days to 19 years admitted to the hospital for > 7 days over a 1-year period at a single institution (n = 160 parent-provider pairs). Descriptive statistics were primarily used and Fisher exact tests and kappa statistics were used to assess agreement. All parents rated communication with their child's care team as excellent, very good, or good, but 56% of parents reported having received conflicting information. Parental perception of "too many" people giving them information was associated with overall poorer communication and less preparedness for decision-making. One-third (32%) of parents felt unprepared for decision-making, despite 88% feeling supported. Parents and physicians showed poor agreement with respect to overall adequacy of communication, receipt of conflicting information, and evaluation of the most effective way for parents to receive information. Interventions involving physician communication training and proactive assessment of parent communication preferences may be beneficial.
父母与患儿提供者之间的沟通对于父母的决策至关重要。本研究探讨了患有晚期心脏病的住院儿童的父母如何看待与患儿提供者的沟通。我们对一家机构在一年时间内收治的年龄在 30 天至 19 岁、住院时间超过 7 天的患有晚期心脏病的儿童的父母和医生进行了前瞻性调查研究（n=160 对父母-提供者）。主要使用描述性统计，Fisher 确切检验和kappa 统计用于评估一致性。所有父母都将与孩子护理团队的沟通评为优秀、很好或好，但 56%的父母报告收到了相互矛盾的信息。父母对“太多人”向他们提供信息的看法与整体沟通较差和决策准备不足有关。尽管 88%的父母感到得到了支持，但仍有三分之一（32%）的父母对决策感到准备不足。父母和医生在沟通是否充分、是否收到相互矛盾的信息以及评估父母最有效的信息接收方式等方面存在较差的一致性。涉及医生沟通培训和主动评估父母沟通偏好的干预措施可能是有益的。
