Poster Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Co-designing digital information resources for children, adolescents and young adults with cancer returning to education and employment in Australia (#733)

Sarah J Ellis 1 2 , Clarissa E Schilstra 1 2 , Claire E Wakefield 1 2 3 , Richard J Cohn 1 2 , Mary Burns 1 2 4 , Ursula M Sansom-Daly 1 2 , Jennifer Cohen 5 , Joanna E Fardell 1 2 6
  1. Behavioural Sciences Unit, Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW, Sydney, NSW, Australia
  2. Kids Cancer Centre, Sydney Children's Hospital, Sydney, NSW, Australia
  3. Division of Quality of Life and Pediatric Palliative Care, Department of Pediatrics,, Stanford Medicine Children’s Health, Palo Alto, California, USA
  4. School of Psychology, University of Sydney, Sydney, NSW, Australia
  5. Canteen, Sydney, NSW, Australia
  6. Western Sydney Youth Cancer Service, Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, NSW, Australia

Background: Cancer diagnosis and treatment can significantly disrupt the educational and employment trajectories of children and adolescents/young adults (AYA), leading to reduced academic achievement, social isolation, and long-term financial and developmental impacts. Despite these challenges, there is a lack of tailored, accessible information to support young people with cancer and their caregivers in navigating education and employment pathways in Australia.

Rationale: Children, AYA and their caregivers report unmet information needs for remaining engaged in education or work during and after cancer. To address this gap, we have co-designed and evaluated two evidence-based, age-appropriate digital resources tailored for young people with cancer in partnerships with community organisations.

Methods: We co-created (1) Ready, Steady, School (RSS), a website to support children with cancer, their parents, and teachers through the education journey from diagnosis to survivorship; and (2) BRIDGES-4AYA, online multi-media information resources to support AYA navigate the return to education and work. We used Pearce’s co-creation framework, involving iterative feedback across co-ideation, co-design, co-implementation, and co-evaluation phases. We conducted mixed-methods evaluations assessing feasibility, acceptability, utility, and alignment with unmet information needs.

Impact on practice: The co-design process and preliminary evaluation of these resources suggest that the content is easy to understand, useful, relevant and improves users’ knowledge of their/their child’s educational/employment needs and strategies to support them. The co-creation approach has also highlighted challenges in recruitment to ensure diverse and adequate representation among consumers; differences in information delivery preferences between stakeholder groups; and resource limitations (e.g. funding, time, technology) which can impact success of co-design and co-implementation in practice.

Discussion: Co-designed digital resources can effectively address the complex and evolving needs of young people with cancer returning to education and employment. However, challenges remain. Strategic partnerships (e.g., with community organisations) and implementation planning are essential to enhance accessibility, uptake, and long-term impact.