Parent perception of telemetric intracranial pressure monitoring in children - A qualitative case study

IF 1.9 Q3 CLINICAL NEUROLOGY
Sarah Hornshøj Pedersen , Sara Duus Gustafsen , Marianne Juhler , Rikke Guldager
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引用次数: 0

Abstract

Introduction

Telemetric monitoring of intracranial pressure (ICP) in children with a complex cerebrospinal disorder might help parents distinguish acute and potential life-threatening symptoms of hydrocephalus from other illnesses.

Research question

What is patient and parent perceptions of system utility of telemetric ICP monitoring, and how does a long-term telemetric implant influence daily life of both patients and their families?

Material and methods

A qualitative case study design with a focus group interview including parents of children with a complex cerebrospinal fluid disorder and an implanted telemetric ICP sensor.

Results

Three parents participated. Based on thematic analysis, three themes were created: ‘Daily living with telemetric ICP monitoring’, ‘Parenting a child with a CSF disorder’, and ‘The healthy sibling’. The ICP sensor provided the parents with security and made them trust their intuition, while the possibility of home monitoring ensured stability for the entire family and had a calming effect on healthy siblings. Home monitoring was seen as the system's greatest advantages, whereas size, weight, and functionality of the external monitoring equipment were highlighted as disadvantages.

Discussion and conclusion

All parents supported the telemetric ICP sensor as a valued tool in treatment guidance of their child and stated that advantages exceeded disadvantages. It was stated that the possibility of conducting ICP measurements at home reduced the need for acute hospital admissions, which consequently led to a more stable daily life for the entire family. Suggestions regarding technical improvements with focus on more compatible external monitoring equipment were raised by all parents included.

家长对遥测儿童颅内压监测的看法--定性案例研究
导言遥测监测复杂性脑脊髓疾病患儿的颅内压(ICP)可帮助家长区分脑积水的急性和潜在生命威胁症状与其他疾病。研究问题患者和家长对遥测 ICP 监测系统效用的看法如何,长期植入遥测 ICP 对患者及其家属的日常生活有何影响?根据主题分析,确定了三个主题:带着遥测 ICP 监测器的日常生活"、"养育脑脊液紊乱患儿 "和 "健康的兄弟姐妹"。ICP 传感器为父母提供了安全感,使他们相信自己的直觉,而家庭监控的可能性则确保了整个家庭的稳定,并对健康的兄弟姐妹产生了安抚作用。家庭监测被视为该系统的最大优点,而外部监测设备的尺寸、重量和功能则被视为缺点。讨论和结论所有家长都支持将遥测式 ICP 传感器作为指导其子女治疗的重要工具,并表示利大于弊。他们表示,在家中进行 ICP 测量的可能性减少了急性入院治疗的需要,从而使整个家庭的日常生活更加稳定。所有家长都提出了有关技术改进的建议,重点是改进外部监测设备的兼容性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Brain & spine
Brain & spine Surgery
CiteScore
1.10
自引率
0.00%
发文量
0
审稿时长
71 days
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