Is it necessary--and possible--to discuss death with a terminally ill child? How should one approach the subject? A recent Swedish study demonstrates the benefits for parents who discuss with their child his or her imminent death, and examines the ways in which caregivers can help such parents. The mother of one child treated in our unit recently wrote a story 48 hours before her child's death. The story served to broach a number of questions often raised by dying children and their families: fear of the unknown, of being replaced, the inevitability of death, grief and fear of being forgotten... Since 2004, the story has been given to several families with dying children in our unit. In order to evaluate the story's impact on families and to determine whether a document which stimulates dialogue should continue to be given to parents, we asked the first thirteen to fill out a questionnaire. The results confirmed that the story was experienced as something positive and that it helped parents to talk with their children. The results of our study lead us to conclude that the medical profession should lend its full support to families who wish to engage in this dialogue with their children. This study also raises many questions and should be part of a global accompaniment strategy. With our support, an illustrated story book called Falikou was published in October 2006.

译文

是否有必要 -- 也有可能 -- 与一个身患绝症的孩子讨论死亡问题?一个人应该如何处理这个问题?瑞典最近的一项研究证明了与孩子讨论即将死亡的父母的好处,并研究了照顾者可以帮助这些父母的方式。在我们单位接受治疗的一个孩子的母亲最近在孩子去世前48小时写了一个故事。这个故事提出了垂死的孩子及其家人经常提出的许多问题: 对未知的恐惧,被取代,死亡的必然性,悲伤和被遗忘的恐惧...从2004开始,这个故事已经给了我们单位几个有垂死孩子的家庭。为了评估故事对家庭的影响并确定是否应继续向父母提供激发对话的文件,我们请前十三位填写问卷。结果证实,这个故事被认为是积极的,它帮助父母与孩子交谈。我们的研究结果使我们得出结论,医学界应全力支持希望与子女进行对话的家庭。这项研究也提出了许多问题,应该成为全球伴奏策略的一部分。在我们的支持下,一本名为Falikou的插图故事书在2006年10月出版。

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