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

Myra Bluebond-Langner; Nicolas Hall; Katherine Vincent; Ellen M Henderson; Jessica Russell; Emma Beecham; Gemma Bryan; Jennifer E Gains; Mark N Gaze; Olga Slater; Richard W Langner; Darren Hargrave

doi:10.1002/pbc.28802

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

Myra Bluebond-Langner, Nicolas Hall, Katherine Vincent, Ellen M Henderson, Jessica Russell, Emma Beecham, Gemma Bryan, Jennifer E Gains, Mark N Gaze, Olga Slater, Richard W Langner, Darren Hargrave

Faculty Of Life & Health Sciences

Research output: Contribution to journal › Article › peer-review

8 Citations (Scopus)

37 Downloads (Pure)

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.

Original language	English
Article number	e28802
Journal	Pediatric blood & cancer
Volume	68
Issue number	3
Early online date	23 Nov 2020
DOIs	https://doi.org/10.1002/pbc.28802
Publication status	Published (in print/issue) - 31 Mar 2021

Bibliographical note

© 2020 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.

Funding Information:
The authors are grateful to all the clinicians, parents, and children who participated in the study described in this article. The authors would also like to thank members of the Great Ormond Street Hospital and University College London Hospital neuro-oncology multidisciplinary team. The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: MBL's post is supported by funding from the True Colour's Trust; NH, KV, EH, JR,GB and DH's posts are all supported by Great Ormond Street Hospital Children's Charity and EB's post is supported by Marie Curie Cancer Care core grant funding. This research was also supported by The Health Foundation, the National Institute for Health Research Great Ormond Street Hospital Biomedical Research Centre and the National Institute for Health Research University College London Hospitals Biomedical Research Centre.

Publisher Copyright:
© 2020 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC

Keywords

Adolescent
Brain Neoplasms/diagnosis
Child
Child, Preschool
Communication
Female
Humans
Infant
Male
Parents/psychology
Physician-Patient Relations
Practice Patterns, Physicians'/standards
Prognosis
Referral and Consultation/standards
Surveys and Questionnaires
Survival Rate
Truth Disclosure/ethics
parent
uncertainty
prognosis
pediatric
prospective studies
cancer
communication

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1002/pbc.28802

Final Published VersionFinal published version, 894 KBLicence: CC BY-NC-ND

Cite this

Bluebond-Langner, M., Hall, N., Vincent, K., Henderson, E. M., Russell, J., Beecham, E., Bryan, G., Gains, J. E., Gaze, M. N., Slater, O., Langner, R. W., & Hargrave, D. (2021). 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. Pediatric blood & cancer, 68(3), Article e28802. https://doi.org/10.1002/pbc.28802

@article{36db7c65cd0f4194b8964a256f2bdfd4,

title = "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.",

keywords = "Adolescent, Brain Neoplasms/diagnosis, Child, Child, Preschool, Communication, Female, Humans, Infant, Male, Parents/psychology, Physician-Patient Relations, Practice Patterns, Physicians'/standards, Prognosis, Referral and Consultation/standards, Surveys and Questionnaires, Survival Rate, Truth Disclosure/ethics, parent, uncertainty, prognosis, pediatric, prospective studies, cancer, communication",

author = "Myra Bluebond-Langner and Nicolas Hall and Katherine Vincent and Henderson, {Ellen M} and Jessica Russell and Emma Beecham and Gemma Bryan and Gains, {Jennifer E} and Gaze, {Mark N} and Olga Slater and Langner, {Richard W} and Darren Hargrave",

note = "{\textcopyright} 2020 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC. Funding Information: The authors are grateful to all the clinicians, parents, and children who participated in the study described in this article. The authors would also like to thank members of the Great Ormond Street Hospital and University College London Hospital neuro-oncology multidisciplinary team. The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: MBL's post is supported by funding from the True Colour's Trust; NH, KV, EH, JR,GB and DH's posts are all supported by Great Ormond Street Hospital Children's Charity and EB's post is supported by Marie Curie Cancer Care core grant funding. This research was also supported by The Health Foundation, the National Institute for Health Research Great Ormond Street Hospital Biomedical Research Centre and the National Institute for Health Research University College London Hospitals Biomedical Research Centre. Publisher Copyright: {\textcopyright} 2020 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC",

year = "2021",

month = mar,

day = "31",

doi = "10.1002/pbc.28802",

language = "English",

volume = "68",

journal = "Pediatric blood & cancer",

issn = "1545-5009",

publisher = "Wiley-Liss Inc.",

number = "3",

}

Bluebond-Langner, M, Hall, N, Vincent, K, Henderson, EM, Russell, J, Beecham, E, Bryan, G, Gains, JE, Gaze, MN, Slater, O, Langner, RW & Hargrave, D 2021, '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', Pediatric blood & cancer, vol. 68, no. 3, e28802. https://doi.org/10.1002/pbc.28802

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. / Bluebond-Langner, Myra; Hall, Nicolas; Vincent, Katherine et al.
In: Pediatric blood & cancer, Vol. 68, No. 3, e28802, 31.03.2021.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - Parents' responses to prognostic disclosure at diagnosis of a child with a high-risk brain tumor

T2 - Analysis of clinician-parent interactions and implications for clinical practice

AU - Bluebond-Langner, Myra

AU - Hall, Nicolas

AU - Vincent, Katherine

AU - Henderson, Ellen M

AU - Russell, Jessica

AU - Beecham, Emma

AU - Bryan, Gemma

AU - Gains, Jennifer E

AU - Gaze, Mark N

AU - Slater, Olga

AU - Langner, Richard W

AU - Hargrave, Darren

N1 - © 2020 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC. Funding Information: The authors are grateful to all the clinicians, parents, and children who participated in the study described in this article. The authors would also like to thank members of the Great Ormond Street Hospital and University College London Hospital neuro-oncology multidisciplinary team. The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: MBL's post is supported by funding from the True Colour's Trust; NH, KV, EH, JR,GB and DH's posts are all supported by Great Ormond Street Hospital Children's Charity and EB's post is supported by Marie Curie Cancer Care core grant funding. This research was also supported by The Health Foundation, the National Institute for Health Research Great Ormond Street Hospital Biomedical Research Centre and the National Institute for Health Research University College London Hospitals Biomedical Research Centre. Publisher Copyright: © 2020 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC

PY - 2021/3/31

Y1 - 2021/3/31

N2 - 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.

AB - 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.

KW - Adolescent

KW - Brain Neoplasms/diagnosis

KW - Child

KW - Child, Preschool

KW - Communication

KW - Female

KW - Humans

KW - Infant

KW - Male

KW - Parents/psychology

KW - Physician-Patient Relations

KW - Practice Patterns, Physicians'/standards

KW - Prognosis

KW - Referral and Consultation/standards

KW - Surveys and Questionnaires

KW - Survival Rate

KW - Truth Disclosure/ethics

KW - parent

KW - uncertainty

KW - prognosis

KW - pediatric

KW - prospective studies

KW - cancer

KW - communication

UR - http://www.scopus.com/inward/record.url?scp=85096643829&partnerID=8YFLogxK

U2 - 10.1002/pbc.28802

DO - 10.1002/pbc.28802

M3 - Article

C2 - 33226200

SN - 1545-5009

VL - 68

JO - Pediatric blood & cancer

JF - Pediatric blood & cancer

IS - 3

M1 - e28802

ER -

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

Bibliographical note

Keywords

UN SDGs

Access to Document

Other files and links

Fingerprint

Cite this