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End of life communication among caregivers of children with cancer: A qualitative approach to understanding support desired by families

Published online by Cambridge University Press:  01 March 2021

Ansley E. Kenney Open the ORCID record for Ansley E. Kenney [Opens in a new window] ,
Sima Zadeh Bedoya ,
Cynthia A. Gerhardt ,
Tammi Young-Saleme  and
Lori Wiener Open the ORCID record for Lori Wiener [Opens in a new window]
Ansley E. Kenney*
Affiliation:
Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH
Sima Zadeh Bedoya
Affiliation:
Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD
Cynthia A. Gerhardt
Affiliation:
Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH Department of Pediatrics and Psychology, The Ohio State University, Columbus, OH Department of Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, OH
Tammi Young-Saleme
Affiliation:
Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH Department of Pediatrics and Psychology, The Ohio State University, Columbus, OH Department of Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, OH
Lori Wiener
Affiliation:
Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD
*
Author for correspondence: Ansley Kenney, Nationwide Children's Hospital, 700 Children's Drive, Columbus, OH 43205, USA. E-mail: [email protected]
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Abstract

Objectives

Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer.

Methods

Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis.

Results

Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support.

Significance of results

Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.

Keywords

CaregiverCommunicationEnd of lifeOncologyPediatric
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 6 , December 2021 , pp. 715 - 722
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Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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