Department of Psychology, University of Wisconsin-Milwaukee, Milwaukee, WI.
Department of Psychology, Southern Illinois University-Carbondale, Carbondale, IL.
Pediatr Crit Care Med. 2024 Feb 1;25(2):128-138. doi: 10.1097/PCC.0000000000003385. Epub 2023 Oct 27.
To describe challenges experienced by parents of children hospitalized in the PICU during PICU admission as reported by family navigators.
A preplanned secondary analysis of open-response data coded via inductive qualitative approach from the Navigate randomized controlled trial (RCT) dataset (ID NCT02333396).
Two university-affiliated PICUs in the Midwestern United States as part of an RCT.
Two hundred twenty-four parents of 190 PICU patients.
In 2015-2017, trained family navigators assessed and addressed parent needs, offered weekly family meetings, and provided post-PICU discharge parent check-ins as part of a study investigating the effectiveness of a communication support intervention ("PICU Supports").
We analyzed qualitative data recorded by family navigators weekly across 338 encounters. Navigators described families' "biggest challenge," "communication challenges," and ways the team could better support the family. We used an inductive qualitative coding approach and a modified member-checking exercise. The most common difficulties included home life , hospitalization , and diagnosis distress (45.2%, 29.0%, and 17.2% of families, respectively). Navigators often identified that parents had co-occurring challenges. Communication was identified as a "biggest challenge" for 8% of families. Communication challenges included lack of information, team communication , and communication quality (7.0%, 4.8%, and 4.8% of families, respectively). Suggestions for improving care included better medical communication, listening, rapport, and resources.
This study describes families' experiences and challenges assessed throughout the PICU stay. Family navigators reported families frequently experience stressors both internal and external to the hospital environment, and communication challenges between families and providers may be additional sources of distress. Further research should develop and assess interventions aimed at improving provider-family communication and reducing stressors outside the hospitalization itself, such as home life difficulties.
描述在儿科重症监护病房（PICU）住院期间，由家庭导航员报告的 PICU 入院儿童的父母所经历的挑战。
对 Navigate 随机对照试验（RCT）数据集（ID NCT02333396）的开放式响应数据进行的预先计划的二次分析，采用归纳定性方法进行编码。
美国中西部的两个大学附属 PICU，作为 RCT 的一部分。
190 名 PICU 患者的 224 名父母。
在 2015 年至 2017 年期间，经过培训的家庭导航员评估并满足了父母的需求，提供每周的家庭会议，并在 PICU 出院后为父母提供检查，作为一项调查沟通支持干预措施（“PICU 支持”）有效性的研究的一部分。
我们分析了家庭导航员在 338 次相遇中每周记录的定性数据。导航员描述了家庭的“最大挑战”，“沟通挑战”，以及团队可以更好地支持家庭的方式。我们使用了归纳定性编码方法和修改后的成员核对练习。最常见的困难包括家庭生活、住院和诊断困扰（分别为 45.2%、29.0%和 17.2%的家庭）。导航员经常发现父母有共同的挑战。沟通是 8%家庭的“最大挑战”。沟通挑战包括信息缺乏、团队沟通和沟通质量（分别为 7.0%、4.8%和 4.8%的家庭）。改善护理的建议包括更好的医疗沟通、倾听、融洽关系和资源。
本研究描述了整个 PICU 住院期间家庭的经历和挑战。家庭导航员报告说，家庭经常经历医院环境内外的压力源，家庭和提供者之间的沟通挑战可能是额外的困扰源。进一步的研究应该开发和评估旨在改善提供者-家庭沟通和减少住院本身以外的压力源的干预措施，例如家庭生活困难。
