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

Abstract

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.