家长视角：在 PICU 做出关键决策时，“做一个好家长”。
The parent perspective: "being a good parent" when making critical decisions in the PICU.
机构信息
1Department of Critical Care Medicine, Children's National Medical Center, Washington, DC. 2Department of Pediatrics, George Washington University School of Medicine, Washington, DC. 3Department of Medical Ethics and Pediatric Advanced Care Team, Children's Hospital of Philadelphia, Philadelphia, PA. 4Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA. 5Department of Nursing Research and Quality Outcomes, Children's National Medical Center, Washington, DC.
出版信息
Pediatr Crit Care Med. 2014 May;15(4):291-8. doi: 10.1097/PCC.0000000000000076.
OBJECTIVE
To identify factors important to parents making decisions for their critically ill child.
DESIGN
Prospective cross-sectional study.
SETTING
Single center, tertiary care PICU.
SUBJECTS
Parents making critical treatment decisions for their child.
INTERVENTION
One-on-one interviews that used the Good Parent Tool-2 open-ended question that asks parents to describe factors important for parenting their ill child and how clinicians could help them achieve their definition of "being a good parent" to their child. Parent responses were analyzed thematically. Parents also ranked themes in order of importance to them using the Good Parent Ranking Exercise.
MEASUREMENT AND MAIN RESULTS
Of 53 eligible parents, 43 (81%) participated. We identified nine themes through content analysis of the parent's narrative statements from the Good Parent Tool. Most commonly (60% of quotes) components of being a good parent described by parents included focusing on their child's quality of life, advocating for their child with the medical team, and putting their child's needs above their own. Themes key to parental decision making were similar regardless of parent race and socioeconomic status or child's clinical status. We identified nine clinician strategies identified by parents as helping them fulfill their parenting role, most commonly, parents wanted to be kept informed (32% of quotes). Using the Good Parent Ranking Exercise, fathers ranked making informed medical decisions as most important, whereas mothers ranked focusing on the child's health and putting their child's needs above their own as most important. However, mothers who were not part of a couple ranked making informed medical decisions as most important.
CONCLUSION
These findings suggest a range of themes important for parents to "be a good parent" to their child while making critical decisions. Further studies need to explore whether clinician's knowledge of the parent's most valued factor can improve family-centered care.
目的
确定对重病患儿父母决策重要的因素。
设计
前瞻性横断面研究。
地点
单中心、三级儿童重症监护病房。
对象
为其子女做出关键治疗决策的父母。
干预措施
一对一访谈，使用“好父母工具-2”开放式问题，要求父母描述养育患病子女的重要因素以及临床医生如何帮助他们实现自己对“成为好父母”的定义。对父母的回答进行主题分析。父母还使用“好父母排名练习”按重要性对主题进行排名。
测量和主要结果
在 53 名符合条件的父母中，有 43 名（81%）参与。我们通过对父母从“好父母工具”中叙述性陈述的内容分析，确定了 9 个主题。父母描述的好父母的组成部分中，最常见的是（60%的引述）关注孩子的生活质量、与医疗团队一起为孩子辩护以及将孩子的需求放在自己的需求之上。父母决策的主题无论父母的种族和社会经济地位或孩子的临床状况如何，都相似。我们确定了父母认为有助于他们履行父母角色的 9 种临床医生策略，最常见的是父母希望获得信息（32%的引述）。使用“好父母排名练习”，父亲将做出明智的医疗决策列为最重要的，而母亲则将关注孩子的健康和将孩子的需求放在自己的需求之上列为最重要的。然而，没有夫妻关系的母亲则将做出明智的医疗决策列为最重要的。
结论
这些发现表明，父母在做出关键决策时，有一系列主题对“成为好父母”对他们的孩子很重要。需要进一步的研究来探讨临床医生对父母最看重因素的了解是否可以改善以家庭为中心的护理。
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