12277Duke University School of Medicine, Durham, NC, USA.
Duke-Margolis Center for Health Policy, Durham, NC, USA.
J Child Neurol. 2022 Mar;37(3):202-209. doi: 10.1177/08830738211056779. Epub 2022 Feb 8.
Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a longitudinal mixed methods study of decision making. We audio recorded family conferences as they occurred and analyzed conferences using a directed content analysis approach. We enrolled 40 infants and 61 parents who participated in 68 family conferences. Thirty-seven conferences contained a treatment decision. We identified 4 key domains of the decision-making process: medical information exchange, values-based exchange, therapeutic partnership, and integration of values into decision making. Discussion of values was typically parent initiated (n = 20, 83%); approximately one-third of conferences did not contain any discussion of parent values. Integration of family values and preferences into decision making occurred in approximately half of conferences. These findings highlight opportunities for interventions that promote values discussion and the integration of values into decision making.
家长和照顾患有神经疾病的婴儿的临床医生经常要做出关乎婴儿护理的高风险决策。为了描述这些决策是如何做出的，我们招募了患有神经疾病的婴儿、他们的父母和他们的临床医生，对他们的决策进行了一项纵向混合方法研究。我们在会议进行时对家庭会议进行了音频记录，并使用有针对性的内容分析方法对会议进行了分析。我们共招募了 40 名婴儿和 61 名家长，他们参加了 68 次家庭会议。37 次会议包含治疗决策。我们确定了决策过程的 4 个关键领域：医学信息交流、基于价值观的交流、治疗伙伴关系以及将价值观纳入决策。价值观的讨论通常由家长发起（n=20，83%）；大约三分之一的会议没有讨论家长的价值观。大约一半的会议将家庭价值观和偏好纳入决策。这些发现强调了促进价值观讨论和将价值观纳入决策的干预措施的机会。
