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“我没有意识到重新回归正常生活会如此艰难”:对小儿感染性休克幸存者结局的定性探索

"I Didn't Realize How Hard It Was Going to Be Just Transitioning Back into Life": A Qualitative Exploration of Outcomes for Survivors of Pediatric Septic Shock.

作者信息

Clark Jonna D, Kraft Stephanie A, Dervan Leslie A, Di Gennaro Jane L, Hurson Jill, Watson Robert S, Zimmerman Jerry J, Meert Kathleen L

机构信息

Department of Pediatrics, Division of Bioethics and Palliative Care, University of Washington School of Medicine, Seattle, Washington, United States.

Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, Washington, United States.

出版信息

J Pediatr Intensive Care. 2021 Oct 22;13(1):63-74. doi: 10.1055/s-0041-1736547. eCollection 2024 Mar.

Abstract

Recovery following pediatric critical illness is multifaceted and complex. While most critically ill children survive, many experience morbidities in physical, emotional, cognitive, and social function. We aimed to deeply explore and describe the multidimensional impact of pediatric septic shock for affected children and their families at the granular level using exploratory qualitative methodology. We performed semistructured telephone interviews of adolescents and caregivers of children admitted with community-acquired septic shock to two tertiary pediatric intensive care units in the United States. Interviews were conducted within two years of hospital admission, and were recorded, transcribed, and analyzed using thematic analysis. Two adolescents and 10 caregivers were interviewed. Participants described meaningful and long-lasting outcomes of septic shock on multiple dimensions of their lives. The adolescents and caregivers described substantial negative consequences on physical health and function which resulted in increased medical complexity and heightened caregiver vigilance. The physical impact led to substantial psychosocial consequences for both the child and family, including social isolation. Most caregivers expressed that septic shock was transformational in their lives, with some caregivers describing posttraumatic growth. This preliminary study provides a novel, granular view of the multidimensional impact of septic shock in pediatric patients and their families. Exploring these experiences through qualitative methodology provides greater insight into important patient and family outcomes. Deeper understanding of these outcomes may support the development of meaningful interventions to improve quality of life for children and their families following critical illness.

摘要

儿科危重症后的康复是多方面且复杂的。虽然大多数危重症儿童能够存活,但许多儿童在身体、情感、认知和社会功能方面会出现疾病。我们旨在运用探索性定性方法,深入探究并描述儿科感染性休克对受影响儿童及其家庭在细粒度层面的多维影响。我们对美国两家三级儿科重症监护病房收治的社区获得性感染性休克儿童的青少年及照料者进行了半结构化电话访谈。访谈在患儿入院两年内进行,并进行了录音、转录,采用主题分析法进行分析。共访谈了两名青少年和十名照料者。参与者描述了感染性休克对他们生活多个维度产生的有意义且持久的影响。青少年和照料者描述了对身体健康和功能的重大负面后果,这导致医疗复杂性增加以及照料者警惕性提高。身体上的影响给儿童和家庭都带来了重大的心理社会后果,包括社会隔离。大多数照料者表示感染性休克改变了他们的生活,一些照料者描述了创伤后成长。这项初步研究提供了关于感染性休克对儿科患者及其家庭多维影响的新颖、细粒度观点。通过定性方法探索这些经历能更深入了解重要的患者和家庭结局。对这些结局的更深入理解可能有助于开发有意义的干预措施,以改善危重症后儿童及其家庭的生活质量。

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