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当为患癌孩子考虑尸检时,父母想知道什么?

What do parents want to know when considering autopsy for their child with cancer?

作者信息

Wiener Lori, Sweeney Corinne, Baird Kristin, Merchant Melinda S, Warren Katherine E, Corner Geoffrey W, Roberts Kailey E, Lichtenthal Wendy G

机构信息

*Pediatric Oncology Branch, National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, MD †Memorial Sloan-Kettering Cancer Center, New York, NY.

出版信息

J Pediatr Hematol Oncol. 2014 Aug;36(6):464-70. doi: 10.1097/MPH.0000000000000078.

Abstract

Research has suggested that autopsy in pediatrics is a valued way for parents to better understand and process their child's death, yet physicians often express hesitancy in discussing this topic with parents. To better assist clinicians with initiating discussion about this often sensitive topic, the current study examined bereaved parents' preferences about the timing and content of the autopsy discussion as well as reasons for considering autopsy. This study explored the views of 30 parents who lost a child to a variety of malignancies between 6 months and 6 years ago. Results showed that 36.7% of parents recalled having a discussion about autopsy, and the vast majority of those who did not recall a discussion (89.5%) would have considered an autopsy if it had been discussed. The majority of participants in this study indicated their preference to have the first conversation about autopsy when it becomes clear that cure is no longer possible. Findings suggest that educating parents about the clinical, emotional, and potential research benefits of autopsy and tissue procurement will ultimately help them make informed decisions and understand the importance of autopsy in medical progress. The future research and clinical implications of these findings are discussed.

摘要

研究表明,儿科尸检是让父母更好地理解和面对孩子死亡的一种重要方式,然而医生在与父母讨论这个话题时常常表现出犹豫。为了更好地帮助临床医生开启关于这个常很敏感话题的讨论,本研究调查了丧亲父母对于尸检讨论的时机和内容的偏好,以及考虑进行尸检的原因。本研究探讨了30位在6个月至6年前因各种恶性肿瘤失去孩子的父母的观点。结果显示,36.7%的父母回忆起曾讨论过尸检,而绝大多数未回忆起有过讨论的父母(89.5%)表示,如果当时有人与他们讨论,他们会考虑进行尸检。本研究中的大多数参与者表示,他们倾向于在明确孩子已无法治愈时首次讨论尸检。研究结果表明,向父母介绍尸检和组织采集在临床、情感及潜在研究方面的益处,最终将有助于他们做出明智的决定,并理解尸检在医学进步中的重要性。本文还讨论了这些研究结果的未来研究方向及临床意义。

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