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隐匿的患者:父母在孩子癌症治疗期间及存活后的反应

The Hidden Sufferers: Parental Reactions to Childhood Cancer during Treatment and at Survival.

作者信息

Castellano-Tejedor Carmina, Blasco-Blasco Tomás, Pérez-Campdepadrós Marta, Capdevila Lluis

机构信息

Hospital Universitari Vall d'Hebron(Spain).

Universitat Autònoma de Barcelona(Spain).

出版信息

Span J Psychol. 2017 Jun 27;20:E29. doi: 10.1017/sjp.2017.26.

DOI:10.1017/sjp.2017.26
PMID:28651673
Abstract

This study was twofold: 1) to assess parental reactions to childhood cancer throughout the oncological experience and 2) to explore associations between parents' reactions during treatment and cancer-related distress at survival. A cross-sectional descriptive study collecting data (at survival) from retrospective (perceived social support, optimism, distress, coping in the worst situation) and current variables (general stress, distress regarding cancer, benefit finding) was carried out. Forty-one parents of childhood cancer survivors were assessed. High levels of distress (M = 9.5, SD = 1.32, range 4-10) and self-reported efforts to overcome difficulties occurring during the hospitalization (M = 7.48, SD = 3.01, range 0-10) were found. However, parents received high social support from very different sources. This could explain the satisfactory levels of optimism found (43.9% of the sample, M ≥ 16, range 9 - 24). Most parents reported to use engagement (M = 2.57, SD = 0.41, range 1-4) and help-seeking (M = 2.52, SD = 0.53, range 1-4) coping strategies to overcome difficulties. Some parents recognized to use psychological defenses when coping with the distress of cancer. However, this disengagement style was less preferred (M = 1.62, SD = 0.37, range 1-4). Finally, 22% of parents reported positive consequences and 60% reported positive and negative consequences too. When exploring how treatment experiences can influence cancer-related distress in survivorship, we observed that those who received less social support used more disengagement coping and referred higher efforts to overcome difficulties during treatment, displayed persistent distress at survival. These same parents showed higher scores on general stress. Besides, these results were not influenced by child's sequelae at survival. These findings support the hypothesis that "the end of treatment is not the end". Consequently, special attention should be placed in screening parents experiences throughout different milestones of cancer to design tailored interventions aimed at reducing persistent distress at survival.

摘要

本研究具有双重目的

1)评估父母在整个肿瘤治疗过程中对儿童癌症的反应;2)探讨父母在治疗期间的反应与生存时癌症相关困扰之间的关联。开展了一项横断面描述性研究,从回顾性变量(感知到的社会支持、乐观情绪、困扰、在最糟糕情况下的应对方式)和当前变量(一般压力、对癌症的困扰、发现益处)收集数据(在生存时)。对41名儿童癌症幸存者的父母进行了评估。发现他们有较高水平的困扰(M = 9.5,SD = 1.32,范围4 - 10)以及自我报告的在住院期间克服困难所做的努力(M = 7.48,SD = 3.01,范围0 - 10)。然而,父母从非常不同的来源获得了较高的社会支持。这可以解释所发现的令人满意的乐观水平(样本的43.9%,M≥16,范围9 - 24)。大多数父母报告使用参与(M = 2.57,SD = 0.41,范围1 - 4)和寻求帮助(M = 2.52,SD = 0.53,范围1 - 4)的应对策略来克服困难。一些父母承认在应对癌症困扰时使用心理防御。然而,这种脱离接触的方式不太受青睐(M = 1.62,SD = 0.37,范围1 - 4)。最后,22%的父母报告了积极后果,60%的父母也报告了积极和消极后果。在探究治疗经历如何影响生存时的癌症相关困扰时,我们观察到那些获得较少社会支持的父母更多地使用脱离接触的应对方式,并且表示在治疗期间为克服困难付出了更高的努力,在生存时表现出持续的困扰。这些父母在一般压力方面得分也更高。此外,这些结果不受生存时孩子后遗症的影响。这些发现支持了“治疗结束并非终点”这一假设。因此,在癌症不同阶段筛查父母的经历时应给予特别关注,以设计针对性的干预措施,旨在减少生存时的持续困扰。

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