经验的声音:荷兰父母对可食性指南和个性化个性化的见解
Lien De Proost1, Angret de Boer2,3, Eduard Verhagen4
1Department of Ethics and Law, Leiden University Medical Center, Leiden, The Netherlands.
Archives of disease in childhood. Fetal and neonatal edition
|August 17, 2024
概括
对于极其早产的婴儿,父母希望在考虑妊娠年龄 (GA) 以外的多个因素的生存指南. 个性化护理,专注于被倾听和有效的沟通,对于决策支持至关重要.
科学领域:
- 新生儿医学 新生儿医学
- 围产期护理 围产期护理
- 定性研究是指质量研究.
背景情况:
- 管理极度早产 (22-26周妊娠年龄) 提出了复杂的伦理和临床挑战.
- 父母参与决策至关重要,但往往缺乏结构化的支持.
- 现有的指导方针可能无法充分解决处于可行性极限的个别病例的细微差别.
研究的目的:
- 探索经验丰富的家长对即将到来的极早分娩管理指南的观点.
- 了解父母对将预后因素和个性化纳入决策工具的偏好.
- 评估不同指导方案的感知效用.
主要方法:
- 进行了19个半结构化的定性访谈,与荷兰的父母进行了23+5和26+2周妊娠年龄之间出生的婴儿的访谈.
- 包括那些选择了息治疗的父母和那些婴儿在重症监护中幸存下来的父母.
- 利用有目的的抽样来确保父母体验的多样性.
主要成果:
- 父母强烈支持需要一个可靠性指南来帮助决策和平衡本能反应.
- 首选的指导方针包括多个预后因素,而不仅仅是妊娠年龄 (GA),以避免信息过载.
- 定义个性化是感觉"被看到和听到",强调与医疗保健专业人员的关系和沟通.
结论:
- 结合多种预后因素的生存指南对于支持父母在生存极限的决定至关重要.
- 个性化护理,以有效的沟通和被重视的感觉为特征,对于在极度早产的情况下满足父母的需求至关重要.
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