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共同设计国家儿童脑瘤家庭手册

Melanie L Rolfe¹, Evonne Miller², Liesje Donkin³

¹Cancer and Palliative Care Outcomes Centre at Centre for Children's Health Research, School of Nursing, Queensland University of Technology, 62 Graham Street, South Brisbane, Brisbane, QLD 4101, Australia.

Children (Basel, Switzerland)

|September 27, 2025

概括

澳大利亚脑瘤儿童的家长现在可以获得共同设计的资源,以满足他们的信息需求. 这个项目开发了量身定制的材料,以赋予家庭导航儿童大脑瘤,提高自我效能和幸福感.

科学领域:

儿科瘤学儿科瘤学
健康心理学心理健康心理学
用户体验设计用户体验设计

背景情况:

患有脑瘤的孩子的父母经历了大量未满足的信息需求.
现有研究强调了信息提供对家庭自我效能和福祉的积极影响.
针对儿童大脑瘤受影响的家庭提供量身定制的澳大利亚专用资源存在差距.

研究的目的:

共同设计文化相关和可访问的信息资源,为澳大利亚家庭的儿童与脑瘤.
为了解决发现的信息差距,并支持家庭的自我效能.
开发一个与消费者和临床医生的需求和偏好一致的资源.

主要方法:

采用混合方法的方法,遵循双钻设计框架.
旅程映射研讨会和代反会议涉及家长和临床医生.
在线调查确定了首选的信息传递方式,景观分析为资源开发提供了信息.

主要成果:

在共同设计过程中,有9名母亲和12名临床医生参与了旅程映射和内容调整.
一项对46名受访者的调查表明,他们更喜欢多模式信息传递.
最终的资源经过了23名临床和消费者评论员的审查,确保其适用性.

结论:

共同设计和自我效能理论是开发一个赋予家庭权力的资源的核心.
由此产生的资源以多种格式 (书籍,数字,音频书籍) 提供,并广泛传播.
该项目成功创建了一个适合目的的国家资源,解决儿童脑瘤家庭的关键信息需求.

关键词:

中枢神经系统瘤中枢神经系统瘤共同设计的共同设计基于社区的参与式研究.心理社会功能心理社会功能

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