Gross Motor Outcomes in Pediatric Intestinal Failure: A Longitudinal Cohort Study

Background: Caregivers of children with intestinal failure provide unique perspectives on their child's quality of life (QoL).This study explores the barriers and facilitators affecting QoL in children with intestinal failure and examines the relationship between child and caregiver QoL.Methods: Semi-structured interviews were conducted with caregivers of children with intestinal failure on home parenteral nutrition and transcribed verbatim.An initial codebook was inductively developed by one coder and subsequently reviewed by two additional coders, who applied the codes to all transcripts.Results: Interviews were conducted with 10 caregivers (9 biological mothers, 1 biological father).Children (50% female) carried diagnoses of short bowel syndrome (n = 8), congenital enteropathy (n = 1), and intestinal dysmotility (n = 1).Barriers to QoL included comparisons to peers, challenges with traditional schooling, and time connected to parenteral nutrition.Facilitators included experience gained over time, strong relationships with the medical team, and family support, particularly closeness within the family unit.Caregivers reported that improved support for swimming and travel could significantly enhance their child's QoL.Amongst caregivers, mental and financial stressors were common.Caregivers felt their own QoL improved with time and as their child's QoL improved.Conclusions: Caregivers offer valuable insight into the barriers and facilitators of QoL in children with intestinal failure.Interventions aimed at improving the safety and feasibility of swimming and travel while on home parenteral nutrition may significantly enhance QoL for both children and caregivers.