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首次咨询揭示儿童癌症诊断:从印度视角看家长的偏好

First Counseling Revealing the Diagnosis of Childhood Cancer: Parent Preferences From an Indian Perspective.

作者信息

Mohan Gem, Scott Julius X, Nasrin Rizwana, Sneha Latha, Manohar Rakesh, Subramanian Lalitha, Narayani Sowmiya, Rajendran Aruna

机构信息

*Division of Pediatric Hemato-OncologyDepartments of †Pediatrics‡Clinical Psychology§Pediatric Hemato-Oncology, Sri Ramachandra University, Chennai, Tamil Nadu, India.

出版信息

J Pediatr Hematol Oncol. 2016 Nov;38(8):622-626. doi: 10.1097/MPH.0000000000000630.

Abstract

BACKGROUND

The first counseling or the exchange between the physician and the parent(s) of children with cancer is of vital importance as it sets the tone for the rest of the treatment. The goal of our study was to find out the preferences among parents of Indian children with cancer regarding communication and breaking of bad news when fully informed about the diagnosis.

MATERIALS AND METHODS

A sample of 60 parents who had been counseled within 3 months from diagnosis were interviewed with a prepared questionnaire directed at eliciting their experiences with the physicians who broke the bad news to them and also suggestions to improve the exchange.

RESULTS

Sixty parents of children diagnosed with cancer participated in the study. All parents agreed on the importance of first counseling and asked for a second round of counseling to reinforce concepts learned during the first counseling. An overall 83% of parents wanted a comparison with another child having the same diagnosis, 57% wanted immediate or extended family to be present, and 92% did not want support staff to be present during counseling. In all, 68% of parents did not want to reveal the diagnosis to the child, 77% wanted as much information about the disease as possible, including estimated cost of treatment, and 90% wanted access to other information services and information about other centers where treatment was available.

CONCLUSIONS

Parents have preferences about the ways in which information is presented to them during the first counseling. Knowing these preferences will help physicians to better their ability to interact with parents in the future during first counseling and help them decide a culturally appropriate course of action.

摘要

背景

医生与癌症患儿家长的首次咨询或交流至关重要,因为它为后续治疗奠定基调。我们研究的目的是了解印度癌症患儿家长在充分知晓诊断结果的情况下,对于沟通及告知坏消息方式的偏好。

材料与方法

对60名在确诊后3个月内接受过咨询的家长进行抽样,使用一份预先准备好的问卷进行访谈,以了解他们与向其告知坏消息的医生的经历,以及对改善交流的建议。

结果

60名癌症患儿的家长参与了该研究。所有家长都认同首次咨询的重要性,并要求进行第二轮咨询以强化首次咨询中学到的概念。总体而言,83%的家长希望与另一名患有相同诊断的患儿进行比较,57%的家长希望直系或大家庭成员在场,92%的家长不希望咨询期间有支持人员在场。总计68%的家长不想向孩子透露诊断结果,77%的家长希望获得尽可能多的关于疾病的信息,包括估计的治疗费用,90%的家长希望获得其他信息服务以及有关其他可进行治疗的中心的信息。

结论

家长对于首次咨询期间信息呈现的方式有偏好。了解这些偏好将有助于医生在未来首次咨询期间更好地与家长互动,并帮助他们决定符合文化背景的适当行动方案。

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