Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study

被引:1
作者
Schilstra, Clarissa E. [1 ]
Ellis, Sarah J. [1 ]
Cohen, Jennifer [2 ,3 ]
Gall, Alana [4 ]
Diaz, Abbey [5 ]
Clarke, Kristina [3 ]
Dumlao, Gadiel [1 ]
Chard, Jennifer [6 ]
Cumming, M. [7 ,8 ]
Davis, Esther [3 ]
Dhillon, Haryana [9 ]
Burns, Mary Anne [9 ]
Docking, Kimberley [1 ,10 ]
Koh, Eng-Siew [1 ,2 ,3 ,11 ,12 ,13 ]
O'Reilly, Josephine [14 ]
Sansom-Daly, Ursula M. [1 ,5 ,14 ]
Shaw, Joanne [9 ]
Speers, Nicole [1 ,4 ]
Taylor, Natalie [2 ]
Warne, Anthea [2 ]
Fardell, Joanna E. [1 ,6 ]
Neuropsych, Clin
机构
[1] Univ New South Wales Sydney, Sydney Childrens Hosp, Fac Med & Hlth, Randwick Clin Campus,Behav Sci Unit,Kids Canc Ctr, Level 1 South,Sydney Childrens Hosp,High St, Randwick 2031, Australia
[2] Univ New South Wales Sydney, Fac Med & Hlth, Randwick Clin Campus, Kensington, Australia
[3] Canteen Australia, Newtown, Australia
[4] Southern Cross Univ, Fac Hlth, Natl Ctr Naturopath Med, Lismore, Australia
[5] Univ Queensland, Fac Med, Sch Publ Hlth, Brisbane, Australia
[6] Westmead Hosp, Crown Princess Mary Canc Ctr, Western Sydney Youth Canc Serv, Westmead, Australia
[7] Univ New South Wales, Fac Arts Design & Architecture, Kensington, Australia
[8] Univ New South Wales Sydney, Disabil Innovat Inst, Kensington, Australia
[9] Univ Sydney, Fac Sci, Sch Psychol, Camperdown, Australia
[10] Univ Sydney, Fac Med & Hlth, Camperdown, Australia
[11] Univ New South Wales, Fac Med & Hlth, South West Sydney Clin Sch, Liverpool, Australia
[12] Liverpool & Macarthur Canc Therapy Ctr, Liverpool, Australia
[13] Ingham Inst Appl Med Res, Liverpool, Australia
[14] Prince Wales Hosp, Nelune Comprehens Canc Ctr, Sydney Youth Canc Serv, Randwick, Australia
来源
JMIR CANCER | 2024年 / 10卷
关键词
adolescent; cancer; education; employment; information needs; oncology; online information; quality of life; resource; return to work; school; study; supportive resources; treatment; young adult; HEALTH INFORMATION; EDUCATION; SURVIVORS; PATIENT; AYA; DIAGNOSIS; INTERNET; RETURN; NEEDS; LIFE;
D O I
10.2196/47944
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
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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页数:14
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