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探讨专业人士对先天性膈疝产前咨询的看法。

Exploring professionals' views regarding prenatal counselling in congenital diaphragmatic hernia.

机构信息

Department of Neonatology, Radboud University Medical Center, Radboud Institute for Health Sciences, Amalia Children's Hospital, Nijmegen, The Netherlands.

Department IQ healthcare, Section Healthcare Ethics, Radboud University Medical Center, Radboud Institute for Health Sciences, Nijmegen, The Netherlands.

出版信息

J Perinat Med. 2023 Aug 11;51(9):1229-1238. doi: 10.1515/jpm-2023-0227. Print 2023 Nov 27.

Abstract

OBJECTIVES

Congenital diaphragmatic hernia (CDH) is a congenital malformation in which the diaphragm and lungs are underdeveloped, leading to cardiorespiratory and other problems. This study aimed to explore professionals' views regarding prenatal counselling in CDH.

METHODS

A qualitative study was performed among healthcare professionals involved in the care of CDH patients in Radboud university medical center Amalia Children's Hospital. Semi-structured interviews were conducted until saturation was achieved. Transcripts were qualitatively analysed to gain insight into professionals' views regarding counselling.

RESULTS

Eighteen professionals with various backgrounds were included. The professionals agreed that the first counselling session should be soon after diagnosis and additional sessions should be offered. Concerning counselling content, participants considered explanation of the diagnosis, prognosis, short- and long-term consequences, treatment options and practical aspects important. As for decision-making about possible termination of pregnancy, all professionals emphasised the importance of the parental role, but the preferred parental involvement varied. Regarding practical aspects, preferred counsellors were a neonatologist, obstetrician, paediatric surgeon and/or medical social worker. Participants emphasised that the counselling should be adjusted to parents' needs.

CONCLUSIONS

This study gained insight into professionals' views regarding the timeline, content, decision-making process, and practical aspects of prenatal counselling in CDH.

摘要

目的

先天性膈疝(CDH)是一种先天性畸形,膈肌和肺发育不全,导致心肺和其他问题。本研究旨在探讨专业人士对 CDH 产前咨询的看法。

方法

在 Radboud 大学医学中心 Amalia 儿童医院参与 CDH 患者护理的医疗保健专业人员中进行了定性研究。进行半结构化访谈,直到达到饱和。对转录本进行定性分析,以深入了解专业人士对咨询的看法。

结果

纳入了 18 名具有不同背景的专业人员。专业人员一致认为第一次咨询应在诊断后尽快进行,并应提供额外的咨询。关于咨询内容,参与者认为解释诊断、预后、短期和长期后果、治疗选择和实际方面很重要。至于可能终止妊娠的决策,所有专业人员都强调了父母角色的重要性,但首选的父母参与方式不同。关于实际方面,首选的咨询人员是新生儿科医生、产科医生、小儿外科医生和/或医务社会工作者。参与者强调咨询应根据父母的需求进行调整。

结论

本研究深入了解了专业人士对 CDH 产前咨询的时间安排、内容、决策过程和实际方面的看法。

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