背景:被诊断患有癌症的青少年和年轻人(AYAs)经历身体,认知,以及癌症治疗产生的社会心理影响,这些影响可能会对他们通过癌症治疗和长期从事教育或工作的能力产生负面影响。脱离教育或工作可能会对AYAs的财务独立产生持久影响,社会心理健康,和生活质量。患有癌症的澳大利亚人缺乏足够的专家支持来满足他们的教育和工作需求,并报告他们倾向于从任何地方获得基于网络的支持,在自己的时间。然而,目前尚不清楚存在哪些基于网络的资源,以支持AYAs与癌症在实现他们的教育或工作目标。
目的:本研究旨在确定针对患有癌症的澳大利亚AYAs存在哪些基于网络的资源,以(1)支持重返教育或工作,以及(2)确定现有资源的程度与年龄有关,癌症特异性,文化包容,和循证;与AYAs共同设计;使用适合年龄的语言;并且很容易找到。
方法:我们于2022年8月通过Google搜索英文搜索词进行了环境扫描,以确定有关被诊断患有癌症的AYAs的就业和教育的信息资源。在MicrosoftExcel中进行数据提取,并评估了以下内容:可理解性和可操作性(使用患者教育和材料工具),可读性(使用悉尼健康素养实验室健康素养编辑),以及资源是否容易定位,以证据为基础,与AYAs共同设计,土著和托雷斯海峡岛民的文化包容性。后者是使用研究小组成员先前制定的7项标准进行评估的。
结果:我们确定了24个基于Web的资源,包括22个书面文本资源和12个视频资源。大多数资源(21/24,88%)是由澳大利亚的非政府组织发布的,加拿大,美国,和英国。共有7个资源集中于教育,8、专注于工作9侧重于教育和工作。对资源的评估显示出较差的可理解性和可操作性。资源很少以证据为基础或由AYAs共同设计,很难在互联网上找到,基本上不包括原住民和托雷斯海峡岛民人口。
结论:尽管癌症患者的网络资源通常可以通过医院或非政府组织的网站获得,这种环境扫描表明,他们将受益于以多种格式提供的更多基于证据和可操作的资源(例如,文本和视听),并量身定制,以适应年龄和文化包容性。
BACKGROUND: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs\' financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals.
OBJECTIVE: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find.
METHODS: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team.
RESULTS: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations.
CONCLUSIONS: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive.