e-Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2020

Building distributed health literacy in adolescents and young adults with cancer through network-focused nursing  (#264)

Danielle Gessler 1 2 3 , Ursula M Sansom-Daly 4 5 6 , Heather L Shepherd 1 2 3 7 , Ilona Juraskova 1 2 3 , Danielle M Muscat 8 , Pandora Patterson 9 10
  1. School of Psychology, The University of Sydney, Sydney, NSW, Australia
  2. Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, Sydney, NSW, Australia
  3. Psycho-oncology Cooperative Research Group (PoCoG), The University of Sydney, Sydney, NSW, Australia
  4. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  5. Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Randwick, NSW, Australia
  6. Sydney Youth Cancer Service, Prince of Wales/Sydney Children's Hospital, Randwick, NSW, Australia
  7. Susan Wakil School of Nursing, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
  8. Sydney Health Literacy Lab, School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
  9. Cancer Nursing Research Unit, The University of Sydney, Sydney, NSW, Australia
  10. CanTeen Australia, Sydney, NSW, Australia

Introduction

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.

Methods

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).

Results

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.

Conclusion

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.