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家庭有声读物作为丧亲之痛的孩子的遗产——绝症父母和亲近者的探索性定量分析。

The usage of family audiobooks as a legacy for grieving children - an exploratory quantitative analysis among terminally ill parents and close persons.

机构信息

Institute for Digitalization and General Medicine, Center for Rare Diseases Aachen (ZSEA), Medical Faculty, RWTH Aachen University, Pauwelsstr. 30, 52074, Aachen, Germany.

Department of Palliative Medicine, University Hospital Bonn, Venusberg Campus 1, 53127, Bonn, Germany.

出版信息

Support Care Cancer. 2024 Oct 25;32(11):746. doi: 10.1007/s00520-024-08945-x.

Abstract

BACKGROUND

Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice. The family audiobook is a professionally supported, voluntary, free service that is unique in Germany. There is little research on digital memories for children. The study aims to understand how this service is used and its influence on children through responses of terminally ill parents and close persons.

METHODS

An anonymous online survey, accessible between September 2023 and November 2023, was conducted among terminally ill parents and their close persons with support from the Family Audiobook Association in Germany. Analyses were carried out using SPSS.

RESULTS

186 respondents, 95 terminally ill parents, and 91 close persons completed the online survey. Almost all terminally ill parents felt eased to have recorded a family audiobook. The two groups showed differences in how they used the family audiobook and how often they listened to it. While some children listen to the family audiobook with their bereaved parents or friends, other children are not yet ready for this, according to the open-ended responses of terminally ill parents and close persons.

CONCLUSIONS

The family audiobook provides a valuable opportunity for terminally ill parents with dependent children under the age of 18 to tell their own biographical story, offer support to the bereaved in remembering, and preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents.

摘要

背景

自 2017 年以来,有未成年子女的绝症父母可以为其子女录制有声读物。这项服务允许他们用自己的声音来讲述自己希望被记住的方式。家庭有声读物是一项在德国独有的、专业支持的、自愿的、免费的服务。针对儿童的数字记忆的研究很少。本研究旨在通过绝症父母和其亲近之人的回应,了解这项服务的使用情况及其对儿童的影响。

方法

2023 年 9 月至 11 月,在德国家庭有声读物协会的支持下,对绝症父母及其亲近之人进行了一项匿名在线调查。使用 SPSS 进行分析。

结果

186 名受访者,其中 95 名为绝症父母,91 名为亲近之人完成了在线调查。几乎所有绝症父母都感到录制家庭有声读物可以让他们得到放松。这两组人在使用家庭有声读物和听有声读物的频率方面存在差异。根据绝症父母和亲近之人的开放性回答,有些孩子会和他们失去亲人的父母或朋友一起听家庭有声读物,而其他孩子还没有准备好。

结论

家庭有声读物为 18 岁以下有未成年子女的绝症父母提供了一个宝贵的机会,可以讲述自己的生平故事,为失去亲人的人提供记忆支持,并为子女保留死者的声音。此外,这种方法可以帮助医疗保健专业人员减轻绝症父母临终关怀带来的压力。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6e12/11511742/4beae23aa97f/520_2024_8945_Fig1_HTML.jpg

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