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

Carlisle EM, Shinkunas LA, Ruba E, Klipowicz CJ, Lieberman MT, Hoffman RM, Reisinger HS. A valued voice: A qualitative analysis of parental decision-making preferences in emergent paediatric surgery. Health expectations : an international journal of public participation in health care and health policy. 2023 Feb 1; 26(1):531-541.

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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.