Evaluation of the Parent Experience with Home Enteral Feeding Tubes in Infants Discharged from the Newborn Intensive Care Unit

Background: Infants who spend time in the Newborn Intensive Care Unit must attain full oral feedings prior to discharge. Waiting for a clinically stable infant to attain full oral feedings can considerably increase their time spent in the hospital. Allowing these infants to discharge home with a feeding tube while they are working on oral feedings is a practice that has been more accepted as literature has shown safety in the practice. Home tube feedings enables patients to have a shorter hospital stay and to be home with their families earlier. Methods: A guideline was established among a group of physicians who are a part of three Newborn Intensive Care Units to help determine what infants may qualify to discharge home with a feeding tube. A specialized feeding clinic was developed in order to give these patients adequate follow-up for their feeding needs post-discharge. This project used an anonymous survey to assess the discharge education received pre-discharge, the parent experience of managing their infant's home tube feedings and the follow-up services they need. Results: Parents that have taken their infant home early from the Newborn Intensive Care Unit on tube feedings have generally been satisfied and felt like it was manageable. Of the 44 useable surveys obtained, 40 (91%) of respondents stated they were sent home with printed educational materials. 43 (98%) expressed some degree of confidence in managing their infant's tube feedings prior to discharge. 40 (91%) reported acceptable levels of stress related to managing their infant's feedings at home, leaving 4 (9%) with an unacceptable level of stress. Common themes were noted as to what services these families felt like they needed the most help with. Overall, 38 (86%) of parents stated that if they could do it over again, they would still take their infant home with a feeding tube, with 2 (5%) stating they are unsure if they would choose the tube again and 4 (9%) that would not choose the tube again. Data was presented to key stakeholders, including leaders and providers in the Newborn Intensive Care Units and providers in the feeding clinic for program improvement. Conclusions: Parents that have taken their infant home early from the NICU on tube feedings have generally been satisfied and felt like it was manageable. Results of the survey are beneficial in understanding the parent experience and needs to facilitate program improvement and better outcomes, as well as identify areas of program success.