Participation of children in the shared decision-making process involving doctors and nurses in a paediatric setting at teaching hospitals

Abstract

Background: In the global effort to enhance the provision of high-quality healthcare in paediatric settings, healthcare providers (HCPs) have developed a range of strategies. One approach that has been employed is the utilisation of shared decision-making (SDM), which places a strong emphasis on children actively participating in their healthcare, particularly during the decision-making process. Despite the abundance of evidence supporting the positive effects of SDM on children, its implementation in paediatric settings remains underrated. In Malaysia, research regarding SDM in paediatric settings is still lacking. This study aims to explore children’s participation in the shared decision-making process related to healthcare in paediatric hospital settings in Malaysia. Methods: This study used a generic qualitative approach. Data was obtained through a combination of participant observation and semi-structured interviews. Participant observation was carried out with 100 participants (26 hospitalised children ranging in age from 7 to 12 years old, their parents, and 48 HCPs from three university hospitals in Malaysia). Semi-structured interviews were conducted with 35 participants (nine children, 12 parents, and 14 HCPs). Data was analysed using framework analysis. Results: Children were seen to participate to varying degrees. Five themes emerged from the children’s participation in the SDM process during their hospitalisation: i) children being ignored, ii) children being informed, iii) children being listened to, iv) children being recognised, and v) children serving as decision-makers. Children occupied one of two roles in the SDM process, being either passive or active participants. The roles of children fluctuated throughout their hospitalisation depending on the circumstances they encountered during the communication and decision-making process. The involvement of parents and HCPs appeared to be the most significant factor influencing the degree of children's participation in the SDM process. The roles of the adults either facilitated or hindered the children’s participation in this process. Conclusion: The children’s preferences and levels of participation consistently exhibited variability. To effectively address the needs and well-being of children, it is imperative for adults to comprehend their thoughts. By doing so, adults can establish meaningful communication with children, optimising their overall health outcomes. HCPs have an especially critical role in facilitating children’s participation by providing information and simultaneously empowering the children’s active involvement. The findings of this study are of vital importance for the field of paediatric healthcare, particularly in relation to enhancing the treatment quality and improving the delivery of healthcare services for children within hospital settings.

Keywords: shared decision-making, participation, involvement, children, healthcare, Malaysia