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[儿科肿瘤学中治疗耐药性的宣告:运用混合方法理解家长的经历及影响因素]

[The announcement of treatment resistance in pediatric oncology: Understanding parents' experiences and influencing factors with a mixed methodology].

作者信息

Terrasson Johanna, Rault Aude, Seigneur Étienne, Brédart Anne, Dolbeault Sylvie

机构信息

PSL université Paris, équipe SHARE Institut Curie, unité de psycho-oncologie, 75005 Paris, France.

PSL université Paris, équipe SHARE Institut Curie, unité de psycho-oncologie, 75005 Paris, France.

出版信息

Bull Cancer. 2023 Jul-Aug;110(7-8):746-757. doi: 10.1016/j.bulcan.2023.03.016. Epub 2023 Apr 24.

Abstract

OBJECTIVE

The announcement of a resistance to treatment in pediatric oncology occurs within the framework of an established parent-pediatrician relationship. The aim of this study was to understand the parents' experience of this announcement and the relational and communicational factors likely to impact it.

METHOD

A mixed-methods study was conducted in a pediatric oncology department with 15 parents of a child with treatment-resistant cancer, with an average age of 40.8years. The parents completed three questionnaires to assess their anxiety and depression (HADS) and their information needs (EORTC - QLQ Info 25 and PTPQ). Semi-structured interviews were conducted and a content analysis was performed.

RESULTS

The majority of parents have "suspected" or "proven" anxiety and/or depressive disorders. The experience of this announcement was influenced by the quality of the parent-pediatrician relationship, the perceived quality of the management, the anticipation of the announcement, the context of the announcement, and the experience of previous announcements. The parents interviewed were very satisfied with the informational exchanges. This satisfaction was underpinned by honest communication and by the responsiveness and availability of the pediatricians.

DISCUSSION

The establishment of a relationship of trust between the family and the pediatrician throughout the course of care plays a major role in the parents' experience of the announcement of resistance to treatment.

摘要

目的

小儿肿瘤学中关于治疗抵抗的告知是在既定的家长 - 儿科医生关系框架内进行的。本研究的目的是了解家长对这一告知的体验以及可能影响该体验的关系和沟通因素。

方法

在一家儿科肿瘤科室对15位患有难治性癌症患儿的家长开展了一项混合方法研究,家长平均年龄为40.8岁。家长们完成了三份问卷,以评估他们的焦虑和抑郁程度(医院焦虑抑郁量表)以及他们的信息需求(欧洲癌症研究与治疗组织 - 生活质量问卷信息模块25和患者信息需求问卷)。进行了半结构化访谈并开展了内容分析。

结果

大多数家长存在“疑似”或“已证实”的焦虑和/或抑郁障碍。这一告知的体验受到家长 - 儿科医生关系质量、感知到的管理质量、告知的预期、告知的背景以及既往告知的体验的影响。接受访谈的家长对信息交流非常满意。这种满意度基于坦诚的沟通以及儿科医生的响应能力和可及性。

讨论

在整个护理过程中,家庭与儿科医生之间建立信任关系对家长体验治疗抵抗的告知起着重要作用。

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