Best of the Best Oral Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2020

Clinical strategies to building health literacy in adolescents and young adults with cancer and their families (#41)

Danielle Gessler 1 2 3 , Ursula M Sansom-Daly 4 5 6 , Pandora Patterson 7 8 , Ilona Juraskova 1 2 3 , Danielle M Muscat 9 , Michael Spoelma 1 , Heather L Shepherd 1 2 3 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. Cancer Nursing Research Unit, The University of Sydney, Sydney, NSW, Australia
  8. CanTeen Australia, Sydney, NSW, Australia
  9. Sydney Health Literacy Lab, School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
  10. Susan Wakil School of Nursing, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia

Introduction

Health literacy has been identified as an essential asset required for adolescents and young adults with cancer (AYAs) to become empowered in their healthcare. However, best-practice guidelines do not currently address clinical approaches to build health literacy in this group. As such, we investigated clinician approaches to building health literacy in AYAs and their families.

Methods

Clinicians working with AYAs aged 15-25 years old participated in a semi-structured qualitative interview. Primary recruitment took place at the 3rd Global Adolescent and Young Adult Cancer Congress and subsequent snowball sampling was used. Interviews were recorded and transcribed, and analysed using Framework Analysis.

Results

Thirty clinicians across Oncology, Nursing, Clinical Psychology, Social Work and other Allied Health were interviewed (mean interview length= 40 minutes).  Clinical approaches for supporting the acquisition and use of health literacy in AYAs were identified throughout the provider-, team- and service-level of healthcare services. Approaches included clinical strategies to i) prioritise rapport with AYAs; ii) engage in clinician reflective practice to consider the unique cancer experience from the AYA perspective, iii) tailor communication by providing appropriate educational material; iv) teach transferrable skills to empower AYAs; v) prioritise family engagement; and vi) work collaboratively as a multidisciplinary team. A model of care that prioritised family involvement and survivorship care was considered essential for supporting the development of health literacy in AYA-family-clinician networks.

Conclusion

Clinicians use a number of different strategies that target the AYA and their family as well as building rapport and a cohesive relationship with the wider multidisciplinary team. This research represents the first step to devising best-practice guidelines for supporting the acquisition of health literacy in AYAs and their family systems. We suggest that recognising the systems that surround AYA cancer care can promote shared, coordinated and effective care across AYA, family and clinician triads.