Aims: Adolescents and young adults (AYAs) diagnosed with cancer report unmet information needs for remaining engaged in education or work through cancer treatment and beyond. To address this gap we used co-design with AYAs with cancer to support uptake and accessibility.
Methods: We applied Pearce’s co-creation framework which specifies four collaborative processes with AYAs with cancer and education/career counsellors at partner organisation Canteen, with aim of increasing uptake and accessibility. We used interviews and focus groups with iterative rounds of feedback and followed the four phases specified by Pearce: i) co-ideation, ii) co-design, iii) co-implementation, and iv) co-evaluation.
Results: Our consumer stakeholder group consisted of five AYAs living with and after cancer and three education career consultants from Canteen. Through iterative rounds of feedback we have codesigned AYA specific resources which are currently being co-implemented and co-evaluated. Key learnings across co-creation and co-design with AYAs with cancer include: i) challenges with recruiting AYA stakeholders mirror challenges AYAs with cancer have with accessing information and supportive care resources; ii) unmet information needs across many domains were reflected in challenges AYAs had with communication with peers, teachers and employers, rather than lack of knowledge as has been suggested previously; iii) AYAs preferences for how information was delivered often differed from education and career counsellors suggestions reflecting age differences in the experience of online environments; iv) there is tension in balancing what AYAs preferences for information resources against what is capable within the scope of current funding and technology.
Conclusions: Co-design of resources with AYAs with cancer has the capacity to uniquely address their unmet needs and support uptake. However, challenges with ensuring representation of diversity of stakeholder opinions of AYAs who are “hard to reach” and resource limitations (e.g. funding, time, technology) can impact success of co-design and co-implementation in practice.