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Communicating with families of young people with hard-to-treat cancers: Healthcare professionals’ perspectives on challenges, skills, and training

Published online by Cambridge University Press:  24 January 2024

Lauren Kelada*
Affiliation:
Discipline of Pediatrics and Child Health, School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, NSW, Australia Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia
Eden G. Robertson
Affiliation:
Discipline of Pediatrics and Child Health, School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, NSW, Australia Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia
Skye McKay
Affiliation:
School of Population Health, UNSW Medicine and Health, UNSW Sydney, NSW, Australia
Brittany C. McGill
Affiliation:
Discipline of Pediatrics and Child Health, School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, NSW, Australia Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia
Rebecca Daly
Affiliation:
Discipline of Pediatrics and Child Health, School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, NSW, Australia Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia
Carolyn Mazariego
Affiliation:
School of Population Health, UNSW Medicine and Health, UNSW Sydney, NSW, Australia
Natalie Taylor
Affiliation:
School of Population Health, UNSW Medicine and Health, UNSW Sydney, NSW, Australia
Elijah Tyedmers
Affiliation:
School of Population Health, UNSW Medicine and Health, UNSW Sydney, NSW, Australia
Nicole Armitage
Affiliation:
Pain and Palliative Care Service, Sydney Children’s Hospital, Randwick, NSW, Australia
Holly E. Evans
Affiliation:
Discipline of Pediatrics and Child Health, School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, NSW, Australia Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia
Claire E. Wakefield
Affiliation:
Discipline of Pediatrics and Child Health, School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, NSW, Australia Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia
David S. Ziegler
Affiliation:
Discipline of Pediatrics and Child Health, School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, NSW, Australia Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia
*
Corresponding author: Lauren Kelada; Email: l.kelada@unsw.edu.au

Abstract

Objectives

Hard-to-treat childhood cancers are those where standard treatment options do not exist and the prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatments. We aimed to identify HCPs’ key challenges and skills required when communicating with families about hard-to-treat cancers and their perceptions of communication-related training.

Methods

We interviewed Australian HCPs who had direct responsibilities in managing children/adolescents with hard-to-treat cancer within the past 24 months. Interviews were analyzed using qualitative content analysis.

Results

We interviewed 10 oncologists, 7 nurses, and 3 social workers. HCPs identified several challenges for communication with families including: balancing information provision while maintaining realistic hope; managing their own uncertainty; and nurses and social workers being underutilized during conversations with families, despite widespread preferences for multidisciplinary teamwork. HCPs perceived that making themselves available to families, empowering them to ask questions, and repeating information helped to establish and maintain trusting relationships with families. Half the HCPs reported receiving no formal training for communicating prognosis and treatment options with families of children with hard-to-treat cancers. Nurses, social workers, and less experienced oncologists supported the development of communication training resources, more so than more experienced oncologists.

Significance of results

Resources are needed which support HCPs to communicate with families of children with hard-to-treat cancers. Such resources may be particularly beneficial for junior oncologists and other HCPs during their training, and they should aim to prepare them for common challenges and foster greater multidisciplinary collaboration.

Type
Original Article
Copyright
© The Author(s), 2024. Published by Cambridge University Press.

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