"It's just us": Families' experiences with temporary tube feeding: A prospective longitudinal survey

Abstract

BACKGROUND: Children with temporary feeding tubes are discharged home with increasing frequency, yet little is known about how families adapt and manage in their home environment. Whereas the physical side effects of temporary feeding tubes are well documented, the psychosocial impact on families remains underresearched. Understanding families' evolving needs is critical to improving care and reducing caregiver burden. AIM: To explore parents' experiences of caring for children with temporary feeding tubes, from insertion to removal and to identify their challenges and evolving needs. METHODS: A longitudinal qualitative descriptive design was used. Parent participants completed diaries and semistructured interviews across three key time points in their child's tube feeding journey (initial, maintenance, final) over a 4-month period. Inductive content analysis was used to analyze data. RESULTS: Thirty-six parent participants completed 81 interviews and 223 diary entries, documenting their experiences over time. An integrative theme identified was families' critical need for ongoing support. Parents were unprepared for tube feeding and faced persistent challenges managing the feeding tube. Their journey transformed from initial uncertainty to self-taught expertise, as they adapted to changing demands. Their need for professional and peer support remained constant throughout. CONCLUSION: These findings underscore the need for systematic improvements, including structured education, consistent follow-up, accessible clinical expertise, and support across the tube feeding journey. Addressing these gaps could improve family well-being, reduce healthcare inequities, and enhance clinical outcomes.