Cancer is a life-changing diagnosis accompanied by significant emotional distress, especially for children with advanced disease. However, the content and processes of discussing emotion in advanced pediatric cancer remain unknown.
To describe the initiation, response, and content of emotional communication in advanced pediatric cancer.
We audiorecorded 35 outpatient consultations between oncologists and families of children whose cancer recently progressed. We coded conversations based on Verona Coding Definitions of Emotional Sequences.
About 91% of conversations contained emotional cues, and 40% contained explicit emotional concerns. Parents and clinicians equally initiated cues (parents: 48%, 183 of 385; clinicians: 49%) and concerns (parents: 51%; clinicians: 49%). Children initiated 3% of cues and no explicit concerns. Emotional content was most commonly related to physical aspects of cancer and/or treatment (28% of cues and/or concerns, present in 80% of conversations) and prognosis (27% of cues and/or concerns, present in 60% of conversations). Clinicians mostly responded to emotional cues and concerns implicitly, without specifically naming the emotion (85%). Back channeling (using minimal prompts or words that encourage further disclosure, e.g., uh-huh) was the most common implicit response that provided space for emotional disclosure (32% of all responses). Information advice was the most common implicit response that reduced space for further emotional disclosure (28%).
Emotional communication in advanced pediatric cancer appears to be a subtle process where parents offer hints and clinicians respond with non-emotion-laden statements. Also, children were seldom engaged in emotional conversations. Clinicians should aim to create an environment that allows families to express emotional distress if and/or when ready.
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Published online: November 13, 2019
Accepted: November 6, 2019
© 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.