Health literacy in adolescents and young adults with cancer (AYAs) is acquired and used via the social networks that surround AYAs, including clinicians and family members. Distributed health literacy is a potential resource for building health literacy in AYAs. We propose that network meetings represent a system-based approach that have the potential to facilitate distributed health literacy in AYA networks and aimed to adapt this to the Australian context through the development of the AYA-DHL framework.
The Danish model of Nurse-chaired AYA Network Meetings (Olsen, 2018) aims to engage the social system surrounding AYAs. Informed by our previous empirical work, and using a co-design methodology, we expanded this model to include a distributed health literacy framework. This was an iterative process involving health literacy and AYA experts and potential end-users (i.e., AYA nursing staff).
The initial stages of the AYA-DHL framework development indicate that network meetings are an appropriate method to facilitate distributed health literacy in the Australian context. The original Nurse-chaired AYA Network Meetings were modified to support distributed health literacy by embedding the following distributed health literacy skills into the standard agenda (Olsen, 2018): i) shared understanding of cancer pathology and treatment; ii) family member involvement in day-to-day illness management; iii) AYA-family-clinician communication; iv) family deliberation of treatment options; and v) shared decision-making.
Recognising clinical and family systems surrounding an AYA represents a valuable insight to developing system-based approaches to address health literacy. The model of Nurse-chaired AYA Network Meetings has been adapted to facilitate distributed health literacy in the Australian context. Future directions involve piloting the AYA-DHL framework to obtain evidence on its feasibility and acceptability in the Australian context.