Objective: To determine the main problems that families experience in the first month after their child is discharged from hospital on home enteral tube feeds (HETF) in terms of obtaining feed and equipment, managing tube feeding and accessing health professionals.
Methods: A multiple choice/short answer questionnaire was used to interview 81 parents/carers of children aged 0-16 years discharged from a supra regional children's hospital on HETF for the first time between December 2001 and August 2003. Questions addressed issues such as: contact with the home delivery company (HDC); delivery of feed and equipment; training; ability to access help; illnesses associated with tube feeding; and understanding of procedures post-discharge.
Results: The main problems identified were: delayed first deliveries (> or =7 days post-discharge; 47%); equipment missing from the first delivery (41%); difficulty obtaining a prescription from the general practitioner (GP) (17%); changing to different equipment post-discharge with minimal training on the new equipment (26%).
Conclusions: There were many problems with delays in delivery of equipment, incorrect equipment and changing of equipment when patients were first discharged on HETF. Significant improvements are necessary in organization of home enteral feeding systems when patients are first discharged.