Parents’ responses to prognostic disclosure at diagnosis of a child with a high‐risk brain tumor: Analysis of clinician‐parent interactions and implications for clinical practice

Abstract

Background Previous studies have found that parents of children with cancer desire more prognostic information than is often given even when prognosis is poor. We explored in audio‐recorded consultations the kinds of information they seek. Methods Ethnographic study including observation and audio recording of consultations at diagnosis. Consultations were transcribed and analyzed using an interactionist perspective including tools drawn from conversation and discourse analysis. Results Enrolled 21 parents and 12 clinicians in 13 cases of children diagnosed with a high‐risk brain tumor (HRBT) over 20 months at a tertiary pediatric oncology center. Clinicians presented prognostic information in all cases. Through their questions, parents revealed what further information they desired. Clinicians made clear that no one could be absolutely certain what the future held for an individual child. Explicit communication about prognosis did not satisfy parents’ desire for information about their own child. Parents tried to personalize prognostic information and to apply it to their own situation. Parents moved beyond prognostic information presented and drew conclusions, which could change over time. Parents who were present in the same consultations could form different views of their child's prognosis. Conclusion Population level prognostic information left parents uncertain about their child's future. The need parents revealed was not for more such information but rather how to use the information given and how to apply it to their child in the face of such uncertainty. Further research is needed on how best to help parents deal with uncertainty and make prognostic information actionable.

Location of end‐of‐life care of children with cancer: A systematic review of parent experiences

“…These findings support and build on results from an earlier qualitative review by Heinze and Nolan (2012), which examined the research on parental decision‐making at end‐of‐life, with communication, extending time, and understanding prognosis emerging as the themes of the published literature at that time 11 . Nearly 10 years on from this initial literature review on parental decision‐making at end‐of‐life, there is a growing body of research emerging around the provision of direct and honest communication at the time of diagnosis for parents of children who have a poor chance of cure, including how the information about prognosis is used by parents 36,37 . From this emerging research stems the recommendation for early referral to specialist pediatric palliative care services at the beginning of the child's cancer experience for those with high‐risk disease and uncertain outcomes 37,38 …”

“…11 Nearly 10 years on from this initial literature review on parental decision-making at end-of-life, there is a growing body of research emerging around the provision of direct and honest communication at the time of diagnosis for parents of children who have a poor chance of cure, including how the information about prognosis is used by parents. 36,37 From this emerging research stems the recommendation for early referral to specialist pediatric palliative care services at the beginning of the child's cancer experience for those with high-risk disease and uncertain outcomes. 37,38 Access to palliative care services provides a time and space for information exchange, discussion of options, and clarification of goals of care, which may include preference of location for care.…”

Prognostic Communication Between Parents and Clinicians in Pediatric Oncology: An Integrative Review

“…Of the 19 articles, 14 (73.7%) were quantitative reporting four datasets, [4][5][6][7][8][9][10]13,14,[23][24][25][26][27] and five (26.3%) were qualitative. [28][29][30][31][32] In total, these studies included 804 parents of 770 children with cancer. Of these, 309 (40.13%) children were diagnosed with hematologic malignancy, 234 (30.39%) children with a solid tumor, and 227 (29.48%) children with a brain tumor.…”

Comment on: Parents’ responses to prognostic disclosure at diagnosis of a child with a high‐risk brain tumor: Analysis of clinician–parent interactions and implications for clinical practice. The role of reflection in dealing with uncertainty

“…The article by Bluebond-Langner et al and the editorial comment by Marron highlight the role of uncertainty in the communication of prognosis to parents of children with cancer. 1,2 Uncertainty is intrinsic to medical practice. It is present from the moment of diagnosis and persists-in varying degrees-through the course of disease, treatment, and recovery or death.…”