探索支持青少年癌症患者恢复学习和工作的网络信息和资源:环境扫描研究。

IF 3.3 Q2 ONCOLOGY JMIR Cancer Pub Date : 2024-03-25 DOI:10.2196/47944
Clarissa E Schilstra, Sarah J Ellis, Jennifer Cohen, Alana Gall, Abbey Diaz, Kristina Clarke, Gadiel Dumlao, Jennifer Chard, Therese M Cumming, Esther Davis, Haryana Dhillon, Mary Anne Burns, Kimberley Docking, Eng-Siew Koh, Josephine O'Reilly, Ursula M Sansom-Daly, Joanne Shaw, Nicole Speers, Natalie Taylor, Anthea Warne, Joanna E Fardell
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引用次数: 0

摘要

背景:被诊断出患有癌症的青少年和年轻成人(AYAs)会因癌症治疗而受到身体、认知和社会心理方面的影响,这可能会对他们在癌症治疗期间和长期继续接受教育或工作的能力产生负面影响。脱离教育或工作会对青少年的经济独立、社会心理健康和生活质量产生持久影响。患有癌症的澳大利亚青少年无法获得足够的专家支持来满足他们的教育和工作需求,他们表示更喜欢可以随时随地、利用自己的时间获得的网络支持。然而,目前尚不清楚有哪些网络资源是专门为帮助患有癌症的澳大利亚青年患者实现其教育或工作目标而量身定制的:本研究旨在确定有哪些网络资源可供患有癌症的澳大利亚青少年使用,以(1)支持他们重返校园或工作岗位;(2)确定现有资源在多大程度上具有年龄针对性、癌症针对性、文化包容性和循证性;是否与青少年共同设计;是否使用适合青少年的语言;以及是否易于查找:我们于 2022 年 8 月在谷歌上使用英文搜索词进行了一次环境扫描,以确定曾被诊断出患有癌症的亚裔美国人的就业和教育信息资源。数据提取在 Microsoft Excel 中进行,并对以下方面进行了评估: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 "悉尼健康扫盲实验室健康扫盲编辑器"),以及资源是否易于查找、是否以证据为基础、是否与青壮年共同设计、是否在文化上包容土著居民和托雷斯海峡岛民。后者采用研究小组成员之前制定的 7 项标准进行评估:我们确定了 24 种网络资源,包括 22 种文字资源和 12 种视频资源。大多数资源(21/24,88%)由澳大利亚、加拿大、美国和英国的非政府组织出版。共有 7 个资源侧重于教育,8 个侧重于工作,9 个同时侧重于教育和工作。对资源的评估表明,其可理解性和可操作性都很差。这些资源很少以证据为基础,也很少由青少年共同设计,很难在互联网上找到,而且大多不包括土著居民和托雷斯海峡岛民:尽管针对罹患癌症的青少年的网络资源通常可通过医院或非政府组织的网站获得,但此次环境扫描表明,以多种形式(如文本和视听)提供更多循证和可操作的资源,并根据年龄和文化包容性进行定制,将使他们受益匪浅。
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Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study.

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.

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来源期刊
JMIR Cancer
JMIR Cancer ONCOLOGY-
CiteScore
4.10
自引率
0.00%
发文量
64
审稿时长
12 weeks
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