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在不确定或生命有限的胎儿诊断中进行生育计划:医生和父母的观点。

Birth Planning in Uncertain or Life-Limiting Fetal Diagnoses: Perspectives of Physicians and Parents.

机构信息

Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.

Division of Neonatal and Pulmonary Biology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.

出版信息

J Palliat Med. 2019 Nov;22(11):1337-1345. doi: 10.1089/jpm.2018.0596. Epub 2019 May 7.

Abstract

Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition. The objective of the study was to (1) discover important components of a birth plan for parents and providers who carry them out, and (2) understand the experience of parents and providers with birth plans. The study design involves mixed-methods, descriptive, exploratory survey. This involves parents ( = 20) of a pregnancy complicated by a life-limiting diagnosis and providers who care for them ( = 116). The approach involves descriptive and univariate analyses for quantitative data and thematic analysis for qualitative data. Consistent components for families and physicians were diagnosis and medical management of the infant. Families gave greater emphasis on memory-making preferences. Parents feel birth plans give them a sense of control. Themes emerged from parents' experience of creating a birth plan are as follows: sense of control, therapeutic, memory making, effective communication, feeling prepared, and unexpected events. Most physicians feel comfortable discussing goals of care with families but report insufficient time. The importance of components of birth plans and perception of the parents' understanding of the prognosis varied by specialty. Birth plans are beneficial and provide a greater sense of control for parents. Most physicians feel comfortable utilizing them. More than one-third of the physicians do not feel that they have time to complete a birth plan with parents. Communication between physicians and families about limitations of the plan and the potential trajectories could be improved. Communication between maternal and neonatal care providers regarding parent expectations and understanding could also be improved.

摘要

提供者经常使用生育计划来记录有生命限制条件的父母对胎儿的愿望。本研究的目的是:(1)发现实施生育计划的父母和提供者的重要组成部分;(2)了解父母和提供者实施生育计划的经验。该研究设计采用混合方法、描述性、探索性调查。这涉及到 20 名怀孕并伴有生命限制诊断的父母和 116 名照顾他们的提供者。该方法包括对定量数据进行描述性和单变量分析,对定性数据进行主题分析。家庭和医生的一致组成部分是婴儿的诊断和医疗管理。家庭更强调记忆制作偏好。父母认为生育计划给了他们一种控制感。从父母制定生育计划的经验中得出的主题如下:控制感、治疗、记忆制作、有效沟通、有备感和意外事件。大多数医生都觉得与家人讨论治疗目标很舒服,但报告说时间不够。生育计划的组成部分的重要性以及对父母对预后的理解程度因专业而异。生育计划对父母有益,并提供更大的控制感。大多数医生都觉得使用它们很舒服。超过三分之一的医生认为他们没有时间与父母一起完成生育计划。医生和家庭之间关于计划限制和潜在轨迹的沟通可以得到改善。产妇和新生儿护理提供者之间关于父母期望和理解的沟通也可以得到改善。

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