Abstract
BACKGROUND: Caregivers of children with intestinal failure provide unique perspectives on their child's quality of life. This study explores the caregiver perception of barriers and facilitators affecting quality of life in children with intestinal failure and examines how caregiver quality of life may be affected. MATERIAL AND METHODS: Semi-structured interviews were conducted with caregivers of children with intestinal failure 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. Thematic analysis was performed, and a conceptual framework was generated. RESULTS: Interviews were conducted with 10 caregivers (9 biological mothers, 1 biological father). Quality of life domains may be grouped into 3 main categories: mental and psychological well-being, daily routine, and activities. Barriers to quality of life within these categories included differences from peers and siblings, mental health struggles, medical complications, procedures and hospitalizations, traditional school settings, swimming, and travel. Facilitators focused on adapting to these differences through support systems at home and school along with the medical care expertise gained over time. Caregivers faced significant impacts on their own quality of life in the areas of mental health, finances, and social activities. CONCLUSION: Caregivers offer valuable insight into the barriers and facilitators of their child's QOL within the context of intestinal failure. Multidisciplinary interventions aimed at supporting families as they adapt to their own unique lifestyle may significantly enhance quality of life for both children and caregivers.