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埃及母亲对医生如何告知其子女残疾的坏消息的偏好:一个结构化的口头问卷。

Egyptian mothers' preferences regarding how physicians break bad news about their child's disability: a structured verbal questionnaire.

机构信息

Department of Pediatrics, Fayoum Faculty of Medicine, Fayoum University, Al Fayoum, Egypt.

出版信息

BMC Med Ethics. 2012 Jul 2;13:14. doi: 10.1186/1472-6939-13-14.

DOI:10.1186/1472-6939-13-14
PMID:22747832
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3411482/
Abstract

BACKGROUND

Breaking bad news to mothers whose children has disability is an important role of physicians. There has been considerable speculation about the inevitability of parental dissatisfaction with how they are informed of their child's disability. Egyptian mothers' preferences for how to be told the bad news about their child's disability has not been investigated adequately. The objective of this study was to elicit Egyptian mothers' preferences for how to be told the bad news about their child's disability.

METHODS

Mothers of 100 infants recently diagnosed with Down syndrome were interviewed regarding their preferences for how to be told bad news. Mothers were recruited through outpatient clinics of the Pediatric Genetics Department at Fayoum University Hospital (located 90 km southwest of Cairo, Egypt) from January to June 2011.

RESULTS AND DISCUSSION

Questionnaire analyses revealed nine themes of parental preferences for how to be told information difficult to hear. Mothers affirmed previously reported recommendations for conveying bad medical news to parents, including being told early, being told of others with a similar condition, and being informed of the prognosis.

CONCLUSIONS

Mothers affirmed communication themes previously discussed in the literature, such as being told early, and being informed of the prognosis. Although more research is needed in this important area, we hope that our findings will stimulate future search and help health care providers in different societies establish guidelines for effectively communicating bad news.

摘要

背景

向孩子有残疾的母亲告知坏消息是医生的重要职责。人们一直在猜测,父母对告知其子女残疾的方式不满意是不可避免的。埃及母亲对如何被告知其子女残疾的坏消息的偏好尚未得到充分调查。本研究的目的是了解埃及母亲对如何被告知其子女残疾的坏消息的偏好。

方法

对 100 名最近被诊断为唐氏综合征的婴儿的母亲进行了采访,询问了她们对如何被告知坏消息的偏好。2011 年 1 月至 6 月,在埃及开罗西南 90 公里的法尤姆大学医院儿科遗传科的门诊病人中招募了母亲。

结果与讨论

问卷调查分析显示,母亲们对如何被告知难以接受的信息有九种偏好。母亲们肯定了以前报告过的向父母传达坏的医疗消息的建议,包括早期告知、告知其他有类似情况的人、告知预后。

结论

母亲们肯定了文献中讨论过的沟通主题,例如早期告知和告知预后。尽管在这个重要领域需要更多的研究,但我们希望我们的发现将激发未来的研究,并帮助不同社会的医疗保健提供者为有效地传达坏消息制定指导方针。

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