INTRODUCTION: While pediatric surgeons consider gastrostomy to be routine treatment for children with feeding difficulties, the impact on the family is not fully understood. This study focuses on Quality of Life (QoL) of parents of children who require a gastrostomy tube.
METHODS: A prospective repeated measures cohort study was conducted between November 2009 and March 2012. Demographic, surgical, and QoL data were collected at Baseline, 2 weeks, 3, 6, 9, and 12 months after surgery. At each time-point parents completed three QoL measures: Short Form 36v2 (SF-36), Caregiver Strain Index (CSI), and Parent Experience of Childhood Illness (PECI).
RESULTS: A total of 31 caregivers were recruited with a mean age of 32.6 years (SD=7.0). Overall, a 38% increased risk of depression was seen in the SF-36 when compared to population norms, and a moderate effect was seen in mental health at 12 months (ES=0.56). The CSI demonstrated a decrease in caregiver burden (8.72 to 7.05, p=0.007, 95% CI (0.57-3.18)), while the PECI revealed a decrease in frequency of feelings of guilt, worry, sorrow, anger, and long term uncertainty over 12 months.
CONCLUSION: Gastrostomy not only improves the child's physical health, but also improves the mental health of the child's caregivers, especially at (or after) one year.