Skip to main content
Top
Published in: Supportive Care in Cancer 4/2019

01-04-2019 | Original Article

Inclusion of children in the initial conversation about their cancer diagnosis: impact on parent experiences of the communication process

Authors: Sarah R. Brand McCarthy, Tammy I. Kang, Jennifer W. Mack

Published in: Supportive Care in Cancer | Issue 4/2019

Login to get access

Abstract

Introduction

Including children in medical conversations is considered the standard of care for children with cancer. However, previous qualitative research has raised concerns about how the child’s presence impacts the parent’s communication experience. The current study examines the frequency and impact of child presence during a serious medical conversation on the parent’s communication experience in pediatric oncology.

Methods

Three hundred sixty parents of children newly diagnosed with cancer completed questionnaires assessing the child’s presence during the initial conversation with the oncologist about diagnosis and treatment and parental communication experiences. Primary oncologists completed a survey question about the child’s prognosis.

Results

Sixty-one percent of children were present during the initial conversation, with lowest rates among children aged 3–6 (44%) and 7–12 (44%). Child presence was not associated with parents’ reports that they received prognostic information (p = 0.20), high-quality information (p = 0.19), or high-quality communication about the child’s cancer (p = 1.0).

Discussion

The parent’s communication experience is not diminished by the choice to include the child. Given the bioethical imperative to include children in conversations about serious illness whenever possible, this concern should not be used to exclude children, but rather to give parents additional time of their own when needed to fully process decisions.
Literature
1.
go back to reference Spinetta JJ, Jankovic M, Masera G, Ablin AR, Barr RD, Arush MWB, D’Angio GJ, van Dongen-Melman J, Eden T, Epelman C, Martins AG, Greenberg ML, Kosmidis HV, Oppenheim D, Zeltzer PM (2009) Optimal care for the child with cancer: a summary statement from the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Pediatr Blood Cancer 52(7):904–907CrossRefPubMed Spinetta JJ, Jankovic M, Masera G, Ablin AR, Barr RD, Arush MWB, D’Angio GJ, van Dongen-Melman J, Eden T, Epelman C, Martins AG, Greenberg ML, Kosmidis HV, Oppenheim D, Zeltzer PM (2009) Optimal care for the child with cancer: a summary statement from the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Pediatr Blood Cancer 52(7):904–907CrossRefPubMed
2.
go back to reference McCabe MA (1996) Involving children and adolescents in medical decision making: developmental and clinical considerations. J Pediatr Psychol 21(4):505–516CrossRefPubMed McCabe MA (1996) Involving children and adolescents in medical decision making: developmental and clinical considerations. J Pediatr Psychol 21(4):505–516CrossRefPubMed
3.
go back to reference Ranmal R, Prictor M, Scott J (2008) Interventions for improving communication with children and adolescents about their cancer. Cochrane Database Syst Rev 8(4):CD002969 Ranmal R, Prictor M, Scott J (2008) Interventions for improving communication with children and adolescents about their cancer. Cochrane Database Syst Rev 8(4):CD002969
4.
go back to reference Coyne I (2006) Consultation with children in hospital: children, parents’ and nurses’ perspectives. J Clin Nurs 15(1):61–71CrossRefPubMed Coyne I (2006) Consultation with children in hospital: children, parents’ and nurses’ perspectives. J Clin Nurs 15(1):61–71CrossRefPubMed
5.
go back to reference Spinetta JJ, Masera G, Eden T et al (2002) Refusal, non-compliance, and abandonment of treatment in children and adolescents with cancer. A report of the SIOP Working Committee on Phychosocial Issues in Pediatric Oncology. Pediatr Blood Cancer 38(2):114–117 Spinetta JJ, Masera G, Eden T et al (2002) Refusal, non-compliance, and abandonment of treatment in children and adolescents with cancer. A report of the SIOP Working Committee on Phychosocial Issues in Pediatric Oncology. Pediatr Blood Cancer 38(2):114–117
6.
go back to reference Keim MC, Lehmann V, Shultz EL, Winning AM, Rausch JR, Barrera M, Jo Gilmer M, Murphy LK, Vannatta KA, Compas BE, Gerhardt CA (2017) Parent-child communication and adjustment among children with advanced and non-advanced cancer in the first year following diagnosis or relapse. J Pediatr Psychol 42:871–881CrossRefPubMedPubMedCentral Keim MC, Lehmann V, Shultz EL, Winning AM, Rausch JR, Barrera M, Jo Gilmer M, Murphy LK, Vannatta KA, Compas BE, Gerhardt CA (2017) Parent-child communication and adjustment among children with advanced and non-advanced cancer in the first year following diagnosis or relapse. J Pediatr Psychol 42:871–881CrossRefPubMedPubMedCentral
8.
go back to reference Levetown M (2008) Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics 121(5):e1441–e1460CrossRefPubMed Levetown M (2008) Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics 121(5):e1441–e1460CrossRefPubMed
9.
go back to reference Young B, Dixon-Woods M, Windridge KC, Heney D (2003) Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. BMJ 326(7384):305CrossRefPubMedPubMedCentral Young B, Dixon-Woods M, Windridge KC, Heney D (2003) Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. BMJ 326(7384):305CrossRefPubMedPubMedCentral
10.
go back to reference Young B, Ward J, Salmon P, Gravenhorst K, Hill J, Eden T (2011) Parents’ experiences of their children’s presence in discussions with physicians about leukemia. Pediatrics 127(5):e1230–e1238CrossRefPubMed Young B, Ward J, Salmon P, Gravenhorst K, Hill J, Eden T (2011) Parents’ experiences of their children’s presence in discussions with physicians about leukemia. Pediatrics 127(5):e1230–e1238CrossRefPubMed
11.
go back to reference Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC (2006) Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. J Clin Oncol 24(33):5265–5270CrossRefPubMed Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC (2006) Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. J Clin Oncol 24(33):5265–5270CrossRefPubMed
12.
go back to reference Mack JW, Cook EF, Wolfe J, Grier HE, Cleary PD, Weeks JC (2007) Understanding of prognosis among parents of children with cancer: parental optimism and the parent-physician interaction. J Clin Oncol 25(11):1357–1362CrossRefPubMed Mack JW, Cook EF, Wolfe J, Grier HE, Cleary PD, Weeks JC (2007) Understanding of prognosis among parents of children with cancer: parental optimism and the parent-physician interaction. J Clin Oncol 25(11):1357–1362CrossRefPubMed
13.
go back to reference Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC (2009) Peace of mind and sense of purpose as core existential issues among parents of children with cancer. Arch Pediat Adol Med 163(6):519–524CrossRef Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC (2009) Peace of mind and sense of purpose as core existential issues among parents of children with cancer. Arch Pediat Adol Med 163(6):519–524CrossRef
14.
go back to reference Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC (2007) Hope and prognostic disclosure. J Clin Oncol 25(35):5636–5642CrossRefPubMed Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC (2007) Hope and prognostic disclosure. J Clin Oncol 25(35):5636–5642CrossRefPubMed
15.
go back to reference Kaye E, Mack JW (2013) Parent perceptions of the quality of information received about a child’s cancer. Pediatr Blood Cancer 60(11):1896–1901CrossRefPubMed Kaye E, Mack JW (2013) Parent perceptions of the quality of information received about a child’s cancer. Pediatr Blood Cancer 60(11):1896–1901CrossRefPubMed
16.
go back to reference Cleary PD, Edgman-Levitan S, Roberts M, Moloney TW, McMullen W, Walker JD, Delbanco TL (1991) Patients evaluate their hospital care: a national survey. Health Aff 10(4):254–267CrossRef Cleary PD, Edgman-Levitan S, Roberts M, Moloney TW, McMullen W, Walker JD, Delbanco TL (1991) Patients evaluate their hospital care: a national survey. Health Aff 10(4):254–267CrossRef
17.
go back to reference Hays RD, Shaul JA, Williams VS et al (1999) Psychometric properties of the CAHPS™ 1.0 survey measures. Med Care 37(3):MS22–MS31PubMed Hays RD, Shaul JA, Williams VS et al (1999) Psychometric properties of the CAHPS™ 1.0 survey measures. Med Care 37(3):MS22–MS31PubMed
18.
go back to reference Katz AL, Webb SA, AAP Committee on Bioethics (2016) Informed consent in decision-making in pediatric practice. Pediatrics 138:e20161486CrossRef Katz AL, Webb SA, AAP Committee on Bioethics (2016) Informed consent in decision-making in pediatric practice. Pediatrics 138:e20161486CrossRef
19.
go back to reference Masera G, Chesler MA, Jankovic M et al (1997) SIOP Working Committee on psychosocial issues in pediatric oncology: guidelines for communication of the diagnosis. Pediatr Blood Cancer 28(5):382–385 Masera G, Chesler MA, Jankovic M et al (1997) SIOP Working Committee on psychosocial issues in pediatric oncology: guidelines for communication of the diagnosis. Pediatr Blood Cancer 28(5):382–385
20.
go back to reference Bluebond-Langner M, Belasco JB, Wander MD (2010) “I want to live, until I don’t want to live anymore”: involving children with life-threatening and life-shortening illnesses in decision making about care and treatment. Nurs Clin N Am 45(3):329–343CrossRef Bluebond-Langner M, Belasco JB, Wander MD (2010) “I want to live, until I don’t want to live anymore”: involving children with life-threatening and life-shortening illnesses in decision making about care and treatment. Nurs Clin N Am 45(3):329–343CrossRef
21.
go back to reference Angiolillo AL, Simon C, Kodish E, Lange B, Noll RB, Ruccione K, Matloub Y (2004) Staged informed consent for randomized clinical trial in childhood leukemia: impact on the consent process. Pediatr Blood Cancer 42(5):433–437CrossRefPubMed Angiolillo AL, Simon C, Kodish E, Lange B, Noll RB, Ruccione K, Matloub Y (2004) Staged informed consent for randomized clinical trial in childhood leukemia: impact on the consent process. Pediatr Blood Cancer 42(5):433–437CrossRefPubMed
22.
go back to reference Johnson LM, Leek AC, Drotar D, Noll RB, Rheingold SR, Kodish ED, Baker JN (2015) Practical communication guidance to improve phase 1 informed consent conversations and decision-making in pediatric oncology. Cancer 121(14):2439–2448CrossRefPubMedPubMedCentral Johnson LM, Leek AC, Drotar D, Noll RB, Rheingold SR, Kodish ED, Baker JN (2015) Practical communication guidance to improve phase 1 informed consent conversations and decision-making in pediatric oncology. Cancer 121(14):2439–2448CrossRefPubMedPubMedCentral
23.
go back to reference Brand SR, Fasciano K, Mack JW (2017) Communication preferences of pediatric cancer patients: talking about prognosis and their future life. Support Care Cancer 25(3):769–774CrossRefPubMed Brand SR, Fasciano K, Mack JW (2017) Communication preferences of pediatric cancer patients: talking about prognosis and their future life. Support Care Cancer 25(3):769–774CrossRefPubMed
24.
go back to reference Clarke JN, Fletcher P (2003) Communication issues faced by parents who have a child diagnosed with cancer. J Pediatr Oncol Nurs 20(4):175–191CrossRefPubMed Clarke JN, Fletcher P (2003) Communication issues faced by parents who have a child diagnosed with cancer. J Pediatr Oncol Nurs 20(4):175–191CrossRefPubMed
Metadata
Title
Inclusion of children in the initial conversation about their cancer diagnosis: impact on parent experiences of the communication process
Authors
Sarah R. Brand McCarthy
Tammy I. Kang
Jennifer W. Mack
Publication date
01-04-2019
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 4/2019
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-019-4653-3

Other articles of this Issue 4/2019

Supportive Care in Cancer 4/2019 Go to the issue
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine