Evaluating caregiver stress in craniosynostosis patients.

Abstract

Objective: Caregiver stress from a child's diagnosis can impact a caregiver's ability to participate in treatment decisions, comply, and manage long-term illness. The aim of this study was to compare caregiver stress in children with craniosynostosis at diagnosis and postoperatively.

Methods: This prospective study included caregivers of pediatric patients with craniosynostosis receiving operative intervention. Demographics and Parenting Stress Index, Short Form (PSI-SF) and Pediatric Inventory for Parents (PIP) surveys at baseline (preoperatively) and 3 and 6 months postoperatively were completed. PSI-SF scores between 15 and 80 are considered normal, with > 85 being clinically significant and requiring follow-up. Higher PIP scores represent increased frequency and difficulty of stressful events due to the child's illness. Pairwise comparisons were performed using the Wilcoxon signed-rank test. Multivariate analysis was performed to assess for PSI-SF and PIP predictors.

Results: Of 106 caregivers (84% Caucasian), there were 62 mothers and 40 fathers. There were 68 and 45 responses at 3 and 6 months postoperatively, respectively. Regarding the baseline group, more than 80% were between 20 and 40 years of age and 58% had less than 2 years of college education. The median household income fell in the $45,001-$60,000 bracket. There was no significant difference between median baseline PSI-SF score (65, IQR 51-80) and those at 3 months (p = 0.45) and 6 months (p = 0.82) postoperatively. Both median PIP frequency (89 vs 74, p < 0.01) and difficulty (79 vs 71, p < 0.01) scores were lower at 3 months, although no significant difference was observed at 6 months (frequency: 95 vs 91, p = 0.67; difficulty: 82 vs 80, p = 0.34). Female sex, uninsured status, and open surgery type were all risk factors for higher parental stress.

Conclusions: Stress levels ranged from normal to clinically significant in the caregivers, with sex, uninsured status, and open repair predicting higher stress. Stress decreased at 3 months postoperatively before increasing at 6 months. Intervention targeting caregiver stress should be explored to maintain lower stress observed at 3 months after surgery.