Hearing your child is diagnosed with leukemia: A qualitative study into parents’ perspectives

Introduction: Hearing a pediatric leukemia diagnosis is overwhelming. Parent satisfaction with the diagnostic conversation contributes to building trust in the oncologist and adaptation to the disease. Limited research has explored parental communication needs during this critical moment. This study...

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Main Authors: Petra Buursma, Daniël Zwerus, Esther M.M. van den Bergh, Natasja Dors, Peter M. Hoogerbrugge, Martha A. Grootenhuis, Marijke C. Kars, Sasja A. Schepers
Format: Article
Language:English
Published: Elsevier 2025-12-01
Series:EJC Paediatric Oncology
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Online Access:http://www.sciencedirect.com/science/article/pii/S2772610X25000960
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author Petra Buursma
Daniël Zwerus
Esther M.M. van den Bergh
Natasja Dors
Peter M. Hoogerbrugge
Martha A. Grootenhuis
Marijke C. Kars
Sasja A. Schepers
author_facet Petra Buursma
Daniël Zwerus
Esther M.M. van den Bergh
Natasja Dors
Peter M. Hoogerbrugge
Martha A. Grootenhuis
Marijke C. Kars
Sasja A. Schepers
author_sort Petra Buursma
collection DOAJ
description Introduction: Hearing a pediatric leukemia diagnosis is overwhelming. Parent satisfaction with the diagnostic conversation contributes to building trust in the oncologist and adaptation to the disease. Limited research has explored parental communication needs during this critical moment. This study aimed to explore parental experiences with communication during diagnostic conversations in pediatric leukemia. Methods: In this qualitative study, we conducted a thematic analysis on semi-structured interviews with parents of children diagnosed with leukemia between June 2022 and February 2023. Results: In total, 25 interviews were conducted with 30 parents (47 % male) of 19 children. Parents described entering the diagnostic conversation in emotional shock, while simultaneously trying to regain control to fulfill their new parental role. We identified three themes facilitating this process. First, parents felt supported by (1) the freedom to ask questions and (2) appropriate responses to their emotions when they were expressed. Nevertheless, if they did not express their emotions, they preferred not being asked about them explicitly. Second, parents appreciated practical information to organize and maximize chances of survival, but felt additional burden when the child was overlooked during the conversation. Third, parents established trust in the oncologist based on their expertise, calm attitude and appearance of mutual respect. Parents valued decisions being made for them, if oncologists were transparent about their reasoning. Conclusion: Results show the importance of validating parents’ preferences during the diagnostic conversation (e.g. about including the child and decision-making). Communication training may support oncologists in understanding the importance of exploring parental communication preferences during diagnostic conversations.
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spelling doaj-art-8f4c9915903a488e98214af4ee14d2ff2025-08-20T03:17:36ZengElsevierEJC Paediatric Oncology2772-610X2025-12-01610030710.1016/j.ejcped.2025.100307Hearing your child is diagnosed with leukemia: A qualitative study into parents’ perspectivesPetra Buursma0Daniël Zwerus1Esther M.M. van den Bergh2Natasja Dors3Peter M. Hoogerbrugge4Martha A. Grootenhuis5Marijke C. Kars6Sasja A. Schepers7Princess Máxima Center for pediatric oncology, Utrecht, the NetherlandsUniversity Medical Center, Utrecht, the Netherlands; Wilhelmina Children’s Hospital, Utrecht, the NetherlandsPrincess Máxima Center for pediatric oncology, Utrecht, the NetherlandsPrincess Máxima Center for pediatric oncology, Utrecht, the NetherlandsPrincess Máxima Center for pediatric oncology, Utrecht, the NetherlandsPrincess Máxima Center for pediatric oncology, Utrecht, the NetherlandsUniversity Medical Center, Utrecht, the NetherlandsPrincess Máxima Center for pediatric oncology, Utrecht, the Netherlands; Correspondence to: Wilhelmina Children’s Hospital, 3584 EA, Utrecht, the Netherlands.Introduction: Hearing a pediatric leukemia diagnosis is overwhelming. Parent satisfaction with the diagnostic conversation contributes to building trust in the oncologist and adaptation to the disease. Limited research has explored parental communication needs during this critical moment. This study aimed to explore parental experiences with communication during diagnostic conversations in pediatric leukemia. Methods: In this qualitative study, we conducted a thematic analysis on semi-structured interviews with parents of children diagnosed with leukemia between June 2022 and February 2023. Results: In total, 25 interviews were conducted with 30 parents (47 % male) of 19 children. Parents described entering the diagnostic conversation in emotional shock, while simultaneously trying to regain control to fulfill their new parental role. We identified three themes facilitating this process. First, parents felt supported by (1) the freedom to ask questions and (2) appropriate responses to their emotions when they were expressed. Nevertheless, if they did not express their emotions, they preferred not being asked about them explicitly. Second, parents appreciated practical information to organize and maximize chances of survival, but felt additional burden when the child was overlooked during the conversation. Third, parents established trust in the oncologist based on their expertise, calm attitude and appearance of mutual respect. Parents valued decisions being made for them, if oncologists were transparent about their reasoning. Conclusion: Results show the importance of validating parents’ preferences during the diagnostic conversation (e.g. about including the child and decision-making). Communication training may support oncologists in understanding the importance of exploring parental communication preferences during diagnostic conversations.http://www.sciencedirect.com/science/article/pii/S2772610X25000960Health communicationLeukemiaPediatricsPatient satisfactionPhysician-patient relations
spellingShingle Petra Buursma
Daniël Zwerus
Esther M.M. van den Bergh
Natasja Dors
Peter M. Hoogerbrugge
Martha A. Grootenhuis
Marijke C. Kars
Sasja A. Schepers
Hearing your child is diagnosed with leukemia: A qualitative study into parents’ perspectives
EJC Paediatric Oncology
Health communication
Leukemia
Pediatrics
Patient satisfaction
Physician-patient relations
title Hearing your child is diagnosed with leukemia: A qualitative study into parents’ perspectives
title_full Hearing your child is diagnosed with leukemia: A qualitative study into parents’ perspectives
title_fullStr Hearing your child is diagnosed with leukemia: A qualitative study into parents’ perspectives
title_full_unstemmed Hearing your child is diagnosed with leukemia: A qualitative study into parents’ perspectives
title_short Hearing your child is diagnosed with leukemia: A qualitative study into parents’ perspectives
title_sort hearing your child is diagnosed with leukemia a qualitative study into parents perspectives
topic Health communication
Leukemia
Pediatrics
Patient satisfaction
Physician-patient relations
url http://www.sciencedirect.com/science/article/pii/S2772610X25000960
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