Experiences and insights from parents of children with temporary feeding tubes

Abstract

This study aimed to describe parents' experiences of children with temporary feeding tubes by surveying parents whose children required tubes. This survey included three sections including; (A) Depression Anxiety Stress Scale (DASS-21); (B) Paediatric Assessment Scale for Severe Feeding Problems (PASSFP); and (C) open-ended questions on satisfaction and experiences. Data were analysed using descriptive statistics and inductive content analysis. A total of 44 parent participants completed the survey. Most participants reported satisfaction with their child's care, although for most, tube removal occurred after ≤5 days (n = 25, 57%). Children who were discharged home with a temporary feeding tube (n = 7, 16%) had more feeding difficulties. Two themes were identified: 1) navigating tube feeding and 2) health service experiences. Although parents were generally positive about their child's care, some described ongoing medical and psychosocial impacts. Many parents desired more involvement in decision-making and tube feeding care. Parents described varied experiences regarding temporary tube feeding both in hospital and after discharge home. Further studies are needed across all spectrums of temporary tube feeding care, especially those discharged home. These findings underscore a need for enhanced support and education for parents, which could improve outcomes for children with temporary feeding tubes.