家长们在想什么?癌症儿童的父母以人为本的资讯主题随时间的变化。

Anders Ringnér, Maria Björk, Cecilia Olsson
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引用次数: 1

摘要

获取孩子的癌症诊断信息是一个复杂且不断变化的过程,父母的需求也会随着时间的推移而变化。到目前为止,我们对父母在孩子疾病的不同阶段需要什么信息知之甚少。这篇论文是一项更大的随机对照试验的一部分,该试验研究的是以父母为中心的信息。本文的目的是描述在护士和癌症儿童父母之间以人为中心的会议上讨论的主题,以及这些会议如何随着时间的推移而变化。采用定性内容分析,我们分析了护士与16位家长的56次会面的书面摘要,然后计算在干预期间任何时间提出每个主题的父母的百分比。主要类别是儿童疾病和治疗(100%的父母)、治疗后果(88%)、儿童情绪管理(75%)、父母情绪管理(100%)、儿童社会生活(63%)和父母社会生活(100%)。不同的话题在不同的时间点被讨论,父亲比母亲更关心孩子的情绪管理和治疗的后果。父母信息需求随时间的变化而变化,并且在父亲和母亲之间存在差异,这意味着信息应该以人为本。在Clinicaltrials.gov注册(NCT02332226)。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
What Was on the Parents' Minds? Changes Over Time in Topics of Person-Centred Information for Mothers and Fathers of Children with Cancer.

Acquiring information about one's child's cancer diagnosis is a complex and ever-changing process, and parents' needs change over time. As yet, we know little about what information parents require at different stages of their child's illness. This paper is part of a larger randomized control trial studying the parent-centered information given to mothers and fathers. The aim of this paper was to describe the topics addressed in person-centered meetings between nurses and parents of children with cancer and how those changed over time. Using qualitative content analysis, we analyzed nurses' written summaries of 56 meetings with 16 parents and then computed for each topic the percentage of parents who brought it up at any time during the intervention. The main categories were Child's disease and treatment (addressed by 100% of parents), Consequences of treatment (88%), Emotional management for the child (75%), Emotional management for the parent (100%), Social life of the child (63%), and Social life of the parent (100%). Different topics were addressed at different points in time, and fathers raised more concerns about the child's emotional management and the consequences of treatment than mothers. This paper suggests that parental information demands change over time and differ between fathers and mothers, implying that information should be person-centered. Registered at Clinicaltrials.gov (NCT02332226).

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