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关注癌症患儿的教育问题——人人有责,人人无责:一项解释性混合方法评估。

Addressing Schooling in Children With Cancer-It's Everybody's Job, So It's Nobody's Job: An Explanatory Mixed-Methods Evaluation.

机构信息

23303Herman & Walter Samuelson Children's Hospital at Sinai, 15851Johns Hopkins School of Nursing, Baltimore, MD, USA.

15851Johns Hopkins School of Nursing, Baltimore, MD, USA.

出版信息

J Pediatr Hematol Oncol Nurs. 2022 Jul-Aug;39(4):221-230. doi: 10.1177/27527530211073295. Epub 2022 Mar 5.

DOI:10.1177/27527530211073295
PMID:35791852
Abstract

Neurocognitive deficits from childhood cancer treatment are common, long-standing, and negatively impact multiple domains of life leading to challenges with schooling and education. The purpose of this study is to describe caregiver-reported experiences of neurocognitive effects from therapy and to understand the roles clinicians play in this domain in the United States. An explanatory mixed-methods study of 174 caregivers of children with cancer provided insight into how clinicians provided information on neurocognitive effects of treatment and their experiences with school-related resources. Clinicians provided descriptions of how they provide this information and assist families with accessing services or transition back to school after therapy. Caregivers identified that physicians, nurses, and social workers primarily provide information regarding neurocognitive effects of treatment. Over half (55.9%) of families seek additional information elsewhere and 49.4% report doing so because the information they received from their team was inadequate. Nearly 40% of caregivers report accessing school supports feels like a constant fight and over 40% were not offered homebound educational services by their school. Qualitative interviews with providers found that clinicians focus on therapy-related physical symptoms of treatment and only discuss neurocognitive effects when prompted by families or when children are returning to school. Clinicians' focus on physical symptoms and just-in-time thinking when it comes to providing education or school-related services may explain why families endorse infrequent education on the topic and challenges with school reintegration. Improved education for clinicians on this topic, integration of interdisciplinary teams, and new clinical practice models may improve the family experience.

摘要

儿童癌症治疗后的神经认知缺陷很常见,且持续时间长,会对生活的多个领域产生负面影响,导致在学校和教育方面面临挑战。本研究的目的是描述照顾者报告的治疗相关神经认知影响的体验,并了解美国临床医生在这一领域所扮演的角色。

一项针对 174 名癌症患儿照顾者的解释性混合方法研究,深入了解了临床医生如何提供治疗相关神经认知影响的信息,以及他们在这一领域与学校相关资源的合作体验。临床医生描述了他们提供这些信息的方式,并协助家庭获得服务或在治疗后重返学校。

照顾者表示,医生、护士和社会工作者主要提供有关治疗相关神经认知影响的信息。超过一半(55.9%)的家庭会从其他地方寻求额外的信息,49.4%的家庭这样做是因为他们从团队那里获得的信息不足。近 40%的照顾者报告说,获取学校支持感觉像是一场持续的战斗,超过 40%的人没有从学校获得上门教育服务。对提供者的定性访谈发现,临床医生专注于治疗相关的身体症状,只有在家庭或孩子返回学校时才会讨论神经认知影响。

临床医生关注身体症状和即时思维,在提供教育或与学校相关的服务方面,这可能解释了为什么家庭对这一主题的教育频率不高,以及重返学校的挑战。改善临床医生在这一主题上的教育,整合多学科团队,以及新的临床实践模式,可能会改善家庭的体验。

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Why Psychosocial Care Matters: Parent Preparedness and Understanding Predict Psychosocial Function When Children Return to School After Cancer.心理社会关怀为何重要:当癌症患儿重返学校时,家长的准备情况和理解程度可预测其心理社会功能。
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