Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2019

Empowering adolescents and young adults with cancer (AYAs) and their families in shared decision-making: Qualitative findings from interviews with healthcare professionals (#155)

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

Objectives/purpose

Triadic decision-making interactions with clinicians, patients and their families represent the routine clinical picture among adolescents and young adults with cancer (AYAs). However, there is no current shared decision-making framework for communicating with this group and research is yet to explore the impact of health literacy in this context. We aimed to investigate healthcare professional perspectives on: i) how AYAs and their families are involved in processes of information sharing and decision-making, ii) health literacy within this group, and iii) strategies that clinicians use for improving triadic decision-making.

Methods

Semi-structured qualitative interviews were conducted with healthcare professionals working with AYAs aged 15-25 years old, including oncologists, general medical practitioners, nurses, psychologists and social workers.

Results

To date, eleven healthcare professionals have participated, with a nine further interviews to be conducted following purposive sampling. The current sample consists of oncologists, nurses, clinical psychologists, and a social worker, with an average of 10.07 years’ experience treating AYAs. All healthcare professionals reported engaging in clinician-patient-family communication processes regarding treatment decisions, associated healthcare decisions, social or lifestyle decisions (i.e., fertility preservation), participation in a clinical trials, and end of life decisions. Family members used health literacy skills to: i) contribute to knowledge about the AYAs condition and management, ii) activate the AYA, iii) help them negotiate their options prior to a decision, and iv) give support in shared decisions.

This study is ongoing and results will be updated.

Conclusion

This research is the first important step in the development of novel decision support tools to enhance patient- and family-centred healthcare for AYAs that recognise health literacy skills distributed within families. By better understanding the facilitators and barriers of effective communication and the process of decision-making, researchers can develop informed and relevant tools and strategies that address AYAs needs in this unique setting.