More than meets the eye: The hidden burden of temporary feeding tubes on children and their families

Abstract

BACKGROUND: Although pediatric temporary (e.g., nasogastric) feeding tubes are widely used for short-term nutrition support, family impacts remain poorly defined. Research from long-term (e.g., gastrostomy) feeding tubes does not generalize because management and burdens differ. This study aimed to explore the financial, time and family burdens of temporary feeding tubes, and their impact on children's quality of life. METHODS: A prospective mixed-methods longitudinal cohort study was conducted, following families over 4 months. Data were collected using diaries, interviews, Pediatric Quality of Life Inventory (PedsQL(TM)) 4.0 Generic Core Scales, and a caregiver burden questionnaire. Analyses included descriptive statistics for financial and time burdens, a multiple linear regression model fitted to identify factors associated with health-related quality of life, and qualitative content analysis. RESULTS: Thirty-six parents participated. Parents reported spending an average of 3.1 h daily on tube-related care. Indirect costs (e.g., lost income) averaged USD$1494.15/month (SD = $339.11), and out-of-pocket nonmedical costs (e.g., hiring help) represented 44% of monthly family income. Employment disruptions were reported by n = 18 (61%) of parents. Key predictors of lower quality of life for children were toddler age group, prior home tube feeding experience, and regional/rural residence. Preterm birth status and involvement of 4-6 medical teams were associated with higher quality of life. Parents reported challenges managing mealtimes, outings, and holidays. CONCLUSION: Temporary tube feeding imposes substantial financial burdens, time demands, and disruptions to family life, with impacts on children's quality of life. Supporting successful management for children requiring this intervention requires integrated family-centered care, including structured support, education, and psychosocial interventions.