Young Kathleen A, Field Natalie K, Nanduri Nikhita, Glass Hannah C, Pollak Kathryn I, Bansal Simran, Lord Blyth, Lemmon Monica E
Duke University School of Medicine, Durham, North Carolina, USA.
Duke University, Durham, North Carolina, USA.
J Palliat Med. 2025 Jan;28(1):18-25. doi: 10.1089/jpm.2024.0272. Epub 2024 Oct 23.
We aimed to characterize parents' perspectives on the value of and opportunities to improve conferences between parents of critically ill infants and the health care team. The parent perspective on the value of family conferences in the intensive care unit is not well characterized. In this descriptive qualitative study, parents of infants with neurological conditions in the intensive care unit at a U.S. academic medical center completed longitudinal semi-structured interviews about their experiences making decisions and communicating with clinicians. Parents were included if they had an upcoming family conference to discuss goals of care or neurological prognosis. This secondary data analysis targets interview content about family conferences. Parent responses were characterized using a conventional content analysis approach. Fifty-two parents of 37 infants completed 123 interviews. Parents described valuing when clinicians (1) provided space to process emotions, (2) prioritized "big picture" discussions about serious decisions, (3) dedicated time to parent questions, and (4) responded to parent concerns and made an effort to foster consensus. Parent-identified opportunities for improvement included: (1) having the team assume responsibility for calling regular meetings, (2) prioritizing attendance of consistent and supportive team members, and (3) summarizing meeting content for parents and documenting discussions for clinicians. These findings demonstrate that parents of infants with neurological conditions value family conferences as an important venue for communicating with the health care team. Future studies should explore the feasibility and impact of regularly scheduled family conferences, attendees dedicated to parent support, and accessible meeting summaries on therapeutic alliance, parent well-being, and communication quality.
我们旨在了解重症婴儿家长对于改善与医疗团队之间会议的价值及机会的看法。目前，重症监护病房中家长对于家庭会议价值的看法尚不明确。在这项描述性定性研究中，美国一家学术医疗中心重症监护病房中患有神经系统疾病婴儿的家长，就他们在决策及与临床医生沟通方面的经历完成了纵向半结构化访谈。如果家长即将参加家庭会议以讨论护理目标或神经预后，则纳入研究。这项二次数据分析以关于家庭会议的访谈内容为目标。采用传统内容分析法对家长的回答进行分析。37名婴儿的52位家长完成了123次访谈。家长们表示重视临床医生做到以下几点：（1）给予处理情绪的空间；（2）优先进行关于重大决策的“全局”讨论；（3）专门留出时间回答家长问题；（4）回应家长关切并努力达成共识。家长提出的改进机会包括：（1）让团队负责召集定期会议；（2）优先安排始终如一且给予支持的团队成员参会；（3）为家长总结会议内容并为临床医生记录讨论情况。这些发现表明，患有神经系统疾病婴儿的家长重视家庭会议，认为这是与医疗团队沟通的重要场所。未来的研究应探讨定期安排家庭会议、安排致力于支持家长的参会人员以及提供便于获取的会议总结对于治疗联盟、家长福祉及沟通质量的可行性及影响。
