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Oceanic Palliative Care Conference 2023
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Bridging the gap between standards and ‘standard-practice’ in palliative care and end-of-life communication with adolescents and young adults with cancer: An international examination of clinical gaps and training needs

Oral Presentation Concurrent Sessions

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Presentation Description

Background: For adolescents and young adults (AYAs) with uncertain cancer prognoses, equitable and inclusive access to age-appropriate palliative care and end-of-life communication is critical. However, data suggests this quality of care is not widely implemented. The Global AYA Cancer Accord End-of-Life Study examined health-professionals’ perspectives on barriers to this communication, to inform training for health-professionals to effectively support it.

Aims: With health-professionals from Australia, New Zealand (NZ), and the United Kingdom (UK), and United States (USA), we aimed to: 1) examine perceived barriers to end-of-life communication and 2) determine the training needs of health-professionals.  

Methodology: Stage 1 involved a cross-sectional survey of barriers to end-of-life communication among Australian, NZ and UK health-professionals. Stage 2 used a two-round Delphi survey establishing (i) content needed in training, and (ii) preferred training models internationally.
Results: Stage 1 included 105 health-professionals from Australia/NZ/UK. Our sample included 23% oncologists/haematologists, 33% nursing professionals, 28% allied-health professionals and 16% palliative care physicians, with 16 years’ clinical experience on average (range 1-43, SD=9.5). Sixty six percent of health-professionals indicated that the greatest barrier to palliative care conversations was not knowing how to introduce the topic. In Stage 2, 77 health-professionals from Australia, NZ, UK and USA identified that structured training programs (28.6% endorsing a mode of 8 out of 10) and learning from bereaved family members (27.3% endorsing mode of 10/10) were the preferred training models to upskill in this area. Timing (37.7% endorsing mode of 9/10) and family processes (36.4% endorsing mode of 8/10) were suggested to be the most important topics for training.

Conclusions: Health-professionals identified communication skills as a key barrier to delivering gold-standard end-of-life care with AYAs. Our data identifying health-professionals’ training modality and topic preferences will directly contribute to developing sustainable training resources to underpin quality care for all AYAs with cancer. 

Presenters

Authors

Authors

Dr Lori Wiener - Psychosocial Support and Research Program, Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, USA. , Associate Professor Anne-Sophie Darlington - School of Health Sciences, University of Southampton, UK. , Dr Hanneke Poort - Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, USA. , Dr Abby Rosenberg - Dana-Farber Cancer Institute, Department of Psychosocial Oncology and Palliative Care; Boston Children’s Hospital, Department of Medicine; Harvard Medical School, Department of Pediatrics , Dr Meaghann Weaver - University of Nebraska Medical Center, USA , Pamela Mosher - Hospital for Sick Children, Toronto, Canada , Professor Afaf Girgis - Centre for Oncology Education and Research Translation (CONCERT), Ingham Institute for Applied Medical Research, UNSW Sydney, NSW, Australia , Ahmed Al-Awamer - Department of Family and Community Medicine, University of Toronto, Canada; Princess Margaret Cancer Center, Toronto, Canada , Louise Sue - Adolescent and Young Adult Cancer Services Team, Canterbury District Health Board, Christchurch, New Zealand , Dr Leigh Donovan - Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital; School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Discipline of Paediatrics & Child Health, The University of New South Wales (UNSW) Sydney; Queensland Children’s Hospital, Australia , Dr Ursula Sansom-Daly - Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital; School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Discipline of Paediatrics & Child Health, The University of New South Wales (UNSW) Sydney; Sydney Youth Cancer Service, Prince of Wales/Sydney Children’s Hospital , Dr Holly Evans - Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital; School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Discipline of Paediatrics & Child Health, The University of New South Wales (UNSW) Sydney , Associate Professor Antoinette Anazodo - Sydney Youth Cancer Service, Prince of Wales/Sydney Children’s Hospital , Dr Jennifer Mack - Population Sciences for Pediatric Hematology/Oncology, Dana-Farber Cancer Institute, USA , Dr Fiona Schulte - Division of Psychosocial Oncology, Department of Oncology, Cumming School of Medicine, University of Calgary, Canada; Hematology, Oncology and Transplant Program, Alberta Children’s Hospital, Canada. , Dr Ruwanthie Fernando - Palliative Care Service, Liverpool Cancer Therapy Centre, Liverpool Hospital , Dr Anthony Herbert - Queensland Children’s Hospital, Australia; Children’s Health Queensland Clinical Unit, Faculty of Medicine, University of Queensland , Dr Susan Trethewie - Sydney Children’s Hospital, Australia , Dr Douglas Fair - Division of Pediatric Hematology/Oncology, Department of Pediatrics, School of Medicine, University of Utah , Dr Anne Kirchoff - Division of Pediatric Hematology/Oncology, Department of Pediatrics, School of Medicine, University of Utah, USA; Cancer Control and Population Sciences, Huntsman Cancer Institute, USA , Dr Toni Lindsay - Chris O’Brien Lifehouse Cancer Centre, Australia , Associate Professor Maria Cable - School of Nursing, Midwifery and Health, Coventry University, Coventry, United Kingdom , Professor Richard Cohn - Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital; School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Discipline of Paediatrics & Child Health, The University of New South Wales (UNSW) Sydney , Associate Professor Pandora Patterson - Research, Evaluation and Social Policy Unit, Canteen Australia; Cancer Nursing Research Unit, Sydney Nursing School, The University of Sydney , Professor Claire Wakefield - Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital; School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Discipline of Paediatrics & Child Health, The University of New South Wales (UNSW) Sydney , Dr Celeste Phillips - School of Nursing, Indiana University, USA , Dr Joan Haase - School of Nursing, Indiana University, USA; The RESPECT Signature Center at IUPUI, USA , Dr Karen Wernli - Kaiser Permanente Washington Health Research Institute, USA

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