Neurologic Outcome After Prematurity: Perspectives of Parents and Clinicians
Neurologic Outcome After Prematurity: Perspectives of Parents and Clinicians
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DOI：
10.1542/peds.2018-3819
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发表时间：
2019-07-01
期刊：
影响因子：
8
通讯作者：
Brandon, Debra
中科院分区：
文献类型：
--
作者：
Lemmon, Monica E.;Huffstetler, Hanna;Brandon, Debra
这项定性描述性研究表明，父母和临床医生讨论和权衡预后信息不同，因为他们考虑早产儿的选择。背景：照顾早产儿的父母和临床医生面临着高风险和时间敏感的护理决策。我们的目的是描述父母和临床医生如何讨论结果的背景下，决策为早产儿。方法：在这个定性描述性研究中，我们采用了以病例为基础的前瞻性设计。针对极端早产病例。父母和临床医生完成了半结构化的采访，在第一年的生活纵向护理决策。访谈数据进行了分析，采用定向内容analysis.Results：16名家长和53名临床医生的10个婴儿完成了178次访谈（n = 115父母，n = 63临床医生）。出现了两个主要主题。首先，家长和临床医生讨论预后信息的方式不同。父母关注的是他们的婴儿是否能存活，而临床医生则专注于神经学结果和残疾生活的可能性。父母对未来的讨论是广泛的，植根于希望和灵性。临床医生的预后语言是狭义的和概率性的。其次，我们确定了对婴儿结局的共同理解的障碍和促进因素。临床医生认为，父母不知道或无法处理有关大局的重要信息。父母重视一致的治疗关系;护理团队的护理和未充分利用的角色的过渡破坏了这种一致性。临床的不确定性迫使父母和临床医生等待，看看关于future.CONCLUSIONS：父母和临床医生讨论和权衡信息的未来不同，因为他们认为选择极早产儿。未来的工作应该描述这些差异对预后沟通和决策的影响。
This qualitative descriptive study illustrates that parents and clinicians discuss and weigh prognostic information differently from each other as they consider choices for premature infants. BACKGROUND:Parents and clinicians caring for premature infants face high-stakes and time-sensitive decisions about care. We aimed to characterize how parents and clinicians discuss outcome in the context of decision-making for premature infants.METHODS:In this qualitative descriptive study, we used a case-based, prospective design. Cases of extreme prematurity were targeted. Parents and clinicians completed semistructured interviews about care decisions longitudinally in the first year of life. Interview data were analyzed by using directed content analysis.RESULTS:Sixteen parents and 53 clinicians of 10 infants completed 178 interviews (n = 115 parent; n = 63 clinician). Two primary themes emerged. First, parents and clinicians discussed prognostic information differently from each other. Parents focused on whether their infant would survive, whereas clinicians concentrated on neurologic outcome and the potential for life with disability. Parent discussion of the future was broad and rooted in hope and spirituality. Clinician prognostic language was narrowly focused and probabilistic. Second, we identified barriers and facilitators to a shared understanding of infant outcome. Clinicians perceived that parents were unaware of or unable to process important information about the big picture. Parents valued consistent therapeutic relationships; transitions of care and underused roles of the care team undermined this consistency. Clinical uncertainty forced parents and clinicians to wait and see about the future.CONCLUSIONS:Parents and clinicians discuss and weigh information about the future differently from each other as they consider choices for extremely premature infants. Future work should characterize the impact of these differences on prognostic communication and decision-making.