Development and validation of the parent experience of child illness

Objective To develop a measure of parent adjustment related to caring for a child with a chronic illness and to evaluate the reliability and validity of the measure with a group of parents of children with brain tumors. Methods One-hundred forty-nine parents of patients (age < 1-17 years) diagnosed with a brain tumor were assessed using the 25-item self-report Parent Experience of Child Illness (PECI). Internal consistency, construct validity, and factor structure were assessed. Results Exploratory factor analysis yielded four theoretically coherent factors including: Guilt and Worry, Emotional Resources, Unresolved Sorrow and Anger, and Long-term Uncertainty. Internal reliability for the PECI scales ranged from .72 to .89, suggesting acceptable reliability. As evidence of construct validity, the PECI scales show significant, positive correlations with scales from established measures of parent adjustment. Conclusion The PECI augments the current literature by providing a brief measure of parents' subjective distress and perceived Emotional Resources, domains that are critical but understudied in children with chronic illness and their caregivers.