van der Geest Ivana M M, van den Heuvel-Eibrink Marry M, van Vliet Liesbeth M, Pluijm Saskia M F, Streng Isabelle C, Michiels Erna M C, Pieters Rob, Darlington Anne-Sophie E
Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands; Department of Pediatric Oncology/Hematology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands.
Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands.
J Pediatr. 2015 Dec;167(6):1320-6. doi: 10.1016/j.jpeds.2015.08.066. Epub 2015 Oct 1.
To investigate the rationale and consequences associated with a parent's decision to discuss death with a child with incurable cancer.
We present data from a larger retrospective study involving bereaved parents of a child who died of cancer. Parents were asked whether they had discussed the impending death with their child, whether they reflected on this discussion positively, their reasons for not discussing death with their child, and the manner in which the conversation regarding death occurred. The data were analyzed qualitatively using a framework approach.
Of the 86 parents of 56 children who answered the questions regarding discussing death with their child, 55 parents of 35 children did not discuss the impending death with their child. The following themes were identified: the parents' inability to discuss the impending death; the parents' desire to protect their child; views regarding talking with children; parents' views of child characteristics; the child's unwillingness to discuss the subject; lack of opportunity to talk; and the child's disability. The parents who did discuss death with their child generally used symbolic and/or religious narratives, or they had brief, direct conversations regarding death. The majority of parents felt positive regarding their decision about whether to talk with their child about his/her impending death.
Most parents in this study cited several reasons for not discussing death with their child. Our findings highlight the sensitive and complex issues surrounding these conversations, indicating that there may be a role for clinicians in supporting parents.
探讨父母决定与患不治之症的孩子谈论死亡的理由及后果。
我们展示了一项更大规模回顾性研究的数据，该研究涉及癌症死亡儿童的丧亲父母。询问父母他们是否与孩子讨论过即将到来的死亡、他们是否对这次讨论持积极态度、他们不与孩子讨论死亡的原因以及关于死亡的谈话是如何进行的。使用框架方法对数据进行定性分析。
在回答关于与孩子讨论死亡问题的56名儿童的86位父母中，35名儿童的55位父母没有与孩子讨论即将到来的死亡。确定了以下主题：父母无法讨论即将到来的死亡；父母保护孩子的愿望；关于与孩子交谈的看法；父母对孩子性格的看法；孩子不愿讨论这个话题；缺乏交谈机会；以及孩子的残疾情况。与孩子讨论过死亡的父母通常使用象征性和/或宗教性的叙述，或者他们就死亡进行了简短、直接的对话。大多数父母对他们是否与孩子谈论其即将到来的死亡的决定持积极态度。
本研究中的大多数父母列举了不与孩子讨论死亡的几个原因。我们的研究结果突出了围绕这些谈话的敏感和复杂问题，表明临床医生在支持父母方面可能发挥作用。
