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关于诊断和预后的沟通-儿科肿瘤学中丧亲父母的一项基于人群的调查。

Communication about diagnosis and prognosis-A population-based survey among bereaved parents in pediatric oncology.

机构信息

Childhood Cancer Research Unit, Department of Women's & Children's Health, Karolinska Institutet, Stockholm, Sweden.

Paediatric Neurology and Musculoskeletal Disorders and Homecare, Children's and Women's Healthcare, Karolinska University Hospital, Stockholm, Sweden.

出版信息

Psychooncology. 2022 Dec;31(12):2149-2158. doi: 10.1002/pon.6058. Epub 2022 Nov 4.

Abstract

INTRODUCTION

When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals.

OBJECTIVES

To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable.

METHODS

Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness.

RESULTS

A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87% of children received diagnostic information and 44% of the children received prognostic information.

CONCLUSION

A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed.

摘要

介绍

当孩子被诊断出患有癌症时,整个家庭都会受到影响,父母会努力掌握有关诊断和预后的具有挑战性的信息。大多数父母和孩子都希望进行诚实的沟通和公开,但这对医疗保健专业人员来说仍然是一项复杂而具有挑战性的任务。

目的

描述丧亲的母亲和父亲报告他们孩子的癌症诊断以及疾病何时变得无法治愈的情况。

方法

对 2016 年进行的一项瑞典基于人群的调查中的数据进行了研究,该调查包括 135 名母亲和 97 名在 1-5 年前失去孩子的父亲,这些父母报告了他们关于孩子疾病的沟通情况。

结果

绝大多数父母在孩子的疾病无法治愈时需要信息,这种需求通常得到满足。然而,父亲的报告程度低于母亲,他们表示自己被告知了这一点。根据父母的报告,87%的儿童获得了诊断信息,44%的儿童获得了预后信息。

结论

绝大多数母亲和父亲都希望知道孩子的疾病何时变得无法治愈,但尚不清楚他们希望孩子在多大程度上得到通知。

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本文引用的文献

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Breaking bad news: what parents would like you to know.传递坏消息:父母希望你了解的事情。
Arch Dis Child. 2021 Mar;106(3):276-281. doi: 10.1136/archdischild-2019-318398. Epub 2020 Oct 30.
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Telling the truth to dying children-End-of-life communication with families.
Acta Paediatr. 2019 Nov;108(11):2111-2112. doi: 10.1111/apa.14935. Epub 2019 Jul 29.

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