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对父母获悉其子女听力损失检测结果的经历进行定性分析。

Qualitative analysis of parents' experience with receiving the news of the detection of their child's hearing loss.

作者信息

Gilbey Peter

机构信息

The Otolaryngology, Head & Neck Surgery Unit, Ziv Medical Center, P.O.B. 1008, Safed 13100, Israel.

出版信息

Int J Pediatr Otorhinolaryngol. 2010 Mar;74(3):265-70. doi: 10.1016/j.ijporl.2009.11.017. Epub 2009 Dec 29.

Abstract

OBJECTIVE

Despite the fact that clinicians are responsible for delivering bad news, they have been shown to lack both confidence and skill in performing this basic task. The time immediately after the detection of childhood hearing loss is perceived as stressful. We conducted a qualitative study to assess parents' experiences with receiving the bad news of the detection of their child's hearing loss.

STUDY DESIGN

Semi-structured interviews were conducted with families of children with hearing loss identified during early childhood.

SETTING

A rehabilitation center treating pre-school children in the north of Israel.

PATIENTS

14 families/parents of children diagnosed prior to the implementation of a universal screening program.

MAIN OUTCOME MEASURE

Parents' perceptions of the manner in which the information regarding the detection of their child's hearing loss was given, and what their feelings were at the time.

RESULTS

50% of parents expressed dissatisfaction with the process of the breaking of the bad news. ABR is perceived by parents and health professionals alike as the definitive moment of diagnosis. The emotions experienced by parents at the moment of the breaking of the bad news were predominantly shock and upset. The meaning of the news was perceived differently under different circumstances. Information given bluntly, without empathy, was a frequent complaint. Parents repeatedly stated the importance of the formulation of a plan for the future.

CONCLUSIONS

Qualitative enquiry provided valuable information. Effective strategies for the breaking of bad news should become an integral part of universal neonatal screening programs.

摘要

目的

尽管临床医生负责传递坏消息,但事实证明他们在执行这项基本任务时既缺乏信心又缺乏技能。儿童听力损失被发现后的即刻被认为压力很大。我们进行了一项定性研究,以评估父母在接到孩子听力损失被发现这一坏消息时的经历。

研究设计

对在幼儿期被确诊为听力损失的儿童家庭进行了半结构化访谈。

研究地点

以色列北部一家治疗学龄前儿童的康复中心。

患者

14个在普遍筛查项目实施之前被诊断出孩子听力损失的家庭/父母。

主要观察指标

父母对告知他们孩子听力损失被发现这一信息的方式的看法,以及他们当时的感受。

结果

50%的父母对坏消息告知过程表示不满。父母和健康专业人员都认为听性脑干反应(ABR)是确诊的决定性时刻。父母在坏消息告知时刻所经历的情绪主要是震惊和不安。在不同情况下,父母对这一消息的理解有所不同。直截了当地告知信息且缺乏同理心是常见的抱怨。父母反复强调制定未来计划的重要性。

结论

定性调查提供了有价值的信息。有效的坏消息告知策略应成为普遍新生儿筛查项目的一个组成部分。

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