A valued voice: A qualitative analysis of parental decision‐making preferences in emergent paediatric surgery

Abstract

Introduction Shared decision‐making, with an emphasis on patient autonomy, is often advised in healthcare decision‐making. However, this may be difficult to implement in emergent settings. We have previously demonstrated that when considering emergent operations for their children, parents prefer surgeon guidance as opposed to shared decision‐making. Here, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision‐making preferences. Methods Parents of paediatric patients who underwent surgery over the past 5 years at a University‐based, tertiary children's hospital for cancer, an emergent operation while in the neonatal intensive care unit (NICU) or extracorporeal membrane oxygenation (ECMO) were invited to complete a 60‐min semi‐structured interview. Interviews were digitally recorded and transcribed verbatim. Thematic content analysis was performed via deductive and inductive analysis. An iterative approach to thematic sampling/data analysis was used. Results Thematic saturation was achieved after 12 interviews (4 cancer, 5 NICU and 3 ECMO). Five common themes were identified: (1) recommendations from surgeons are valuable; (2) ‘lifesaving mode’: parents felt there were no decisions to be made; (3) effective ways of obtaining information about treatment; (4) shared decision‐making as a ‘dialogue’ or ‘discussion’ and (5) parents as a ‘valued voice’ to advocate for their children. Conclusions When engaging in decision‐making regarding emergent surgical procedures for their children, parents value a surgeon's recommendation. Parents felt that discussion or dialogue with surgeons defined shared decision‐making, and they believed that the opportunity to ask questions gave them a ‘valued voice’, even when they felt there were no decisions to be made. Patient or Public Contribution For this study, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision‐making preferences. Parents thus provided all the data for the study.