CanTeen Australia, Sydney, Australia.
Cancer Nursing Research Unit, The University of Sydney, Sydney, Australia.
Psychooncology. 2019 Dec;28(12):2323-2335. doi: 10.1002/pon.5274. Epub 2019 Nov 11.
Parents with cancer want information about maintaining family functioning despite cancer. This scoping review assesses what online information resources are available to help parents with cancer maintain family functioning, the quality of the available information, and whether resources provide specific advice for parents of adolescent and young adult (AYA) children.
To identify available relevant English-language online information resources, we imitated a parental online information search using three search engines (Google, Yahoo, and Bing). Online resources from the last 10 years for parents with cancer addressing family functioning were included. These resources were rated using the DISCERN instrument-a tool for rating the reliability and quality of health information resources.
684 results were screened and 33 online information resources from the USA, UK, Australia, Canada, and Ireland met the inclusion criteria. Average DISCERN quality was 54/80 (95% CI:50-58), which is typical for online health information. The highest rated resources provided information for parents on supporting their AYA children's needs for information and support with feelings, but few comprehensively covered other specific AYA needs. Details on resource weaknesses as identified by the DISCERN are presented.
Several high-quality resources for parents with cancer were identified from multiple countries, allowing health professionals internationally to direct patients with cancer to relevant high quality online information. Highlighted limitations in resource quality and scope will guide future resource development and revision, ensuring more comprehensive high quality information is available to support families affected by parental cancer internationally.
癌症患者的父母希望获得有关维持家庭功能的信息，尽管他们患有癌症。本范围综述评估了哪些在线信息资源可帮助癌症患者的父母维持家庭功能，评估现有信息的质量，以及这些资源是否为青少年和年轻成人（AYA）患儿的父母提供了具体建议。
为了确定可用的相关英语在线信息资源，我们使用三个搜索引擎（Google、Yahoo 和 Bing）模拟了父母的在线信息搜索。纳入了过去 10 年中针对癌症患者家庭功能的父母的在线资源。使用 DISCERN 工具（一种评估健康信息资源可靠性和质量的工具）对这些资源进行评分。
筛选出 684 项结果，来自美国、英国、澳大利亚、加拿大和爱尔兰的 33 个在线信息资源符合纳入标准。平均 DISCERN 质量为 54/80（95%CI：50-58），这是在线健康信息的典型水平。评分最高的资源为父母提供了有关满足 AYA 子女对信息和情感支持需求的信息，但很少全面涵盖其他特定的 AYA 需求。介绍了 DISCERN 识别的资源弱点的详细信息。
从多个国家确定了几个针对癌症患者父母的高质量资源，使国际上的卫生专业人员能够将癌症患者引导至相关的高质量在线信息。资源质量和范围的突出限制将指导未来资源的开发和修订，确保在国际上为受父母癌症影响的家庭提供更全面、高质量的信息。
