Empowering Voices: Understanding Children's Roles and Preferences in Shared Decision-Making

Abstract

Introduction: Shared decision-making (SDM) in paediatric healthcare presents a unique dynamic involving children, parents, and healthcare professionals. While previous research has focused on the roles of parents and healthcare professionals in this process, little attention has been given to the roles adopted by children themselves. This study aimed to explore the nature of children’s participation and their preferred roles in the SDM process during hospitalisation. Method: Using a genP6 qualitative approach, data was collected from 26 hospitalised children aged 7 to 12 years, their parents, and 48 healthcare professionals across three teaching hospitals in Malaysia. Data collection involved participant observation and a single interview with nine of the study’s child participants. Results: Children assumed either passive or active roles in the SDM process, with their roles fluctuating depending on the circumstances and adult involvement in communication. While some children were content with passive participation, others expressed a desire for greater involvement. Those who actively participated appreciated their role. Conclusion: The study highlights the challenge of determining the most appropriate role for children, as their preferences may not consistently align with their actual level of participation. Those involved in SDM with children must possess the ability to thoroughly understand their desires and communication needs, ensuring that their active involvement is both meaningful and fulfilling.