Patient and caregiver perspectives on feeding tube transitions: a qualitative interview study

Abstract Objectives Enteral feeding provides nutrition for children with paediatric feeding disorders. Different types of tubes are used depending on the duration of enteral feeding and whether gastric or jejunal feeds are better tolerated. Many children move from one type of tube to another; these are important transitions in the health journey of a child. This study aimed to gain a thorough understanding of the patient and caregiver perspectives and experiences during enteral feeding transitions. Methods This qualitative study included semi-structured interviews of 16 individuals, including 14 caregivers and 2 youth with feeding tubes from 2 tertiary care centres. Interviews were conducted exploring the following key topics: (1) child and family context; (2) experience transitioning to a different enteral feeding tube; and (3) goals and expectations before and during tube transitions. Data were analysed using inductive thematic analysis. Results The following themes were identified: (1) The decision-making process for tube transitions requires family involvement and advocacy; (2) The tube transition itself must be supported by adequate preparation and training; and (3) Children and caregivers have their own hopes and expectations for tube transitions. To supplement these themes, a table of youth/caregiver identified benefits and challenges for nasogastric versus surgical tubes was created. Conclusion Feeding tube transitions are important transition points for children, youth, and families. Integrating their perspectives is critical to optimal decision-making, management, and training around feeding tube transitions. Deliberate shared decision-making would optimize the transition process by individualizing the timing, education and expectations.