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How do we achieve quality age-appropriate palliative care communication for adolescents and young adults with serious illnesses? Adapting the Voicing my Choices communication guide for young Australians

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Quality palliative care for diverse populations, both for consumers and service providers

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Presentation Description

Background. Introducing palliative care concepts to adolescents and young adults (AYAs) with serious illnesses such as cancer in age-appropriate ways is a standard of care, yet happens infrequently, and often too late. Using communication tools to support these conversations may be one modifiable strategy to improve access to quality palliative care, and thereby enhance AYAs quality of care and life. 

Aims. This multi-perspective study examined the acceptability and utility of ‘Voicing My CHOiCES’ (VMC), a US-based palliative communication tool, in the Australian context. We also aimed to explore barriers and facilitators to these conversations, using such communication tools. 

Methods. Semi-structured interviews with Australian health-professionals, AYA cancer survivors (aged 15-25), and parents focused on: (i) acceptability of VMC, (ii) perceived barriers and facilitators to communication, (iii) preferences for improving current practices, including adapting and implementing VMC locally.

Results.We interviewed 47 participants (n=9 AYAs, n=5 parents, and n=33 interdisciplinary health-professionals with 17 mean years clinical experience, range=4-30). Acceptability of VMC was high across groups (rating: M=4/5, SD=.77). All participants felt an adapted VMC would be suitable for implementation in Australia. Health-professionals own ‘readiness’ was the most endorsed barrier to palliative communication (44%); 29% endorsed good rapport as a facilitator. Perspectives differed on optimal timing for introducing palliative conversations, though relapse was considered an appropriate time by the greatest subset (40%). Parents and AYAs agreed that psychosocial or nursing professionals were best suited to introduce VMC (80% of parents, 50% of AYAs).

Conclusions.VMC is a promising tool to enable higher quality palliative care and quality of life for AYAs. These findings have informed an adapted VMC, tailored to suit Australian AYAs’ cultural, linguistic, and health-system needs and preferences. To enable local uptake of the new Australian VMC, future research addressing professional and health-system capacity, comfort will underpin best-practice palliative care communication. 

Presenters

Dr Ursula Sansom-Daly

Senior Research Fellow and Director, Behavioural Sciences Unit
UNSW Sydney

Authors

Authors

Dr Ursula Sansom-Daly - Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital; School of Clinical Medicine, The University of New South Wales (UNSW) Sydney; Sydney Youth Cancer Service, Nelune Comprehensive Cancer Centre, Prince of Wales Hospital , Dr Holly Evans Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital; School of Clinical Medicine, The University of New South Wales (UNSW) Sydney - , Dr Lori Wiener - Pediatric Oncology Branch, National Cancer Institute, Center for Cancer Research, National Institutes of Health, USA , Associate Professor Antoinette Anazodo - Sydney Youth Cancer Service, Nelune Comprehensive Cancer Centre, Prince of Wales Hospital , Dr Pandora Patterson - Community First Step , Professor Richard Cohn - Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital; School of Clinical Medicine, The University of New South Wales (UNSW) Sydney , Professor Claire Wakefield - Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital; School of Clinical Medicine, The University of New South Wales (UNSW) Sydney

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