Abstract

Purpose

This paper explores parents’ experiences of breaking news and communicating to the child with cancer and their siblings, and identifies the supports parents request to help them in this role. This paper represents one component of a wider action research study which employed mixed methods to explore supports needed by parents of children with a cancer diagnosis in the Republic of Ireland.

Research Design

This paper reports on the survey phase of the study, which involved the distribution of a postal survey to 550 families of children in cancer treatment and remission. This survey included four open-ended questions exploring parents’ experiences of breaking news and communicating about the illness to the ill child and his/her siblings. Descriptive statistics on the profile of the parents were generated with computer software package SPSS and qualitative responses were analyzed using the survey questions as the initial framework.

Findings

Parents identified four interventions that helped ease the distress of these difficult conversations: coaching, resources, team engagement, and play therapy. Parents expressed concern for siblings, describing them as “suffering” and “forgotten”. Parents requested four sibling-specific interventions: the creation of resources for siblings, therapeutic support, coaching for parent-sibling conversations, standardize a family meeting with the multi-disciplinary team that includes siblings.

Implications for Psychosocial Providers

This paper demonstrates how the practical supports requested by parents which are consistent with the principles embedded within the internationally defined psychosocial standards of care could be translated into practice when supporting parents to communicate with children in the context of pediatric cancer.

中文翻译：

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“很难找到合适的词”：父母在突发新闻和与癌症患儿及其兄弟姐妹交流时的需求

摘要

目的

本文探讨了父母在突发新闻和与癌症儿童及其兄弟姐妹交流方面的经历，并确定了父母为帮助他们担任这一角色而要求的支持。本文代表了一项更广泛的行动研究的一个组成部分，该研究采用混合方法来探索爱尔兰共和国被诊断患有癌症的儿童的父母所需的支持。

研究设计

本文报告了该研究的调查阶段，其中涉及向 550 个接受癌症治疗和缓解的儿童家庭分发邮寄调查。这项调查包括四个开放式问题，探讨父母在突发新闻和向生病的孩子及其兄弟姐妹传达疾病方面的经历。使用计算机软件包 SPSS 生成有关父母概况的描述性统计数据，并使用调查问题作为初始框架分析定性回答。

发现

家长们确定了四种有助于缓解这些困难对话带来的痛苦的干预措施：指导、资源、团队参与和游戏治疗。父母表达了对兄弟姐妹的关心，将他们描述为“受苦”和“被遗忘”。父母要求进行四项针对兄弟姐妹的干预措施：为兄弟姐妹创建资源、治疗支持、指导父母与兄弟姐妹的对话、规范与包括兄弟姐妹在内的多学科团队的家庭会议。

对社会心理提供者的影响

本文展示了在支持父母与儿童癌症背景下的儿童沟通时，如何将父母要求的与国际定义的社会心理护理标准中所包含的原则相一致的实际支持转化为实践。