How to support parents and healthcare professionals in the decision-making process of tube feeding in children?

Background: Tube feeding in children has a severe psychosocial impact on children and their families. Parents also feel that they have limited communication with healthcare professionals (HCPs) about decision-making and the implications of tube feeding. Objective: This study focussed on the parents’ experiences and expectations about tube feeding of children and a solution to improve the management and communication of it. Methods: We applied a design thinking method in two parts. First, focus groups and individual interviews were conducted with parents of children aged 0–10 years who are or had been tube fed and HCPs. Thereafter, two sounding boards with HCPs and parents were convened to discuss improvements in the management of tube feeding. Results: In total, 17 parents participated in the study. Two main topics derived from the focus groups and interviews: psychosocial impact and communication with HCPs. The sounding boards (five HCPs and two parents) divided the challenges of tube feeding into three stages: the moment tube feeding is considered, the insertion of the tube in the hospital, and transfer to the domestic environment and follow-up. Interview topics were used to develop a communication sheet to support the decision process of tube feeding. Conclusions: The empowerment of parents in the process of tube feeding is important. More attention should be paid to alternatives, consequences, and planning for the long term. The developed communication sheet offers suggestions for issues to discuss and could support communication between parents and HCPs about tube feeding.