JMIR Publications

ABSTRACT

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 wellbeing, and quality of life. Australian AYAs with cancer lack access to adequate specialist supports for their education and work needs, and report preference for online support that they can access from anywhere, in their own time. However, it remains unclear what online resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals.

Objective:

This study aimed to determine (1) what online resources exist for Australian AYAs with cancer, to support return to education or work, and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, 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; PEMAT), readability (using the Sydney Health Literacy Lab (SHeLL) editor), and whether the resource was easy to locate, evidence-based, co-designed with AYA, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using seven criteria previously developed by members of the research team.

Results:

We identified 24 online resources comprised of 20 written text resources and 12 video resources. Most resources (87.5%) were published by non-government organisations (NGOs) in Australia, Canada, the USA, and the UK. Seven resources focused on education, eight focused on work, and nine focused on both education and work. Evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, were difficult to locate online, and were largely not inclusive of Aboriginal and Torres Strait Islander populations.

Conclusions:

Although online resources for AYAs with cancer are often available through the websites of hospitals or NGOs, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (e.g., text and audio-visual) and tailored to be age-appropriate and culturally inclusive.