Development and validation of the parent experience of child illness

Development and validation of the parent experience of child illness

Bonner MJ; Hardy KK; Guill AB; McLaughlin C; Schweitzer H; Carter K

Journal of Pediatric Psychology

2005

Family; Parents; PedPal Lit; Caregiver; Child Illness

Objective To develop a measure of parent adjustment related to caring for a child with achronic illness and to evaluate the reliability and validity of the measure with a group of parentsof 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-reportParent Experience of Child Illness (PECI). Internal consistency, construct validity, and factorstructure were assessed. Results Exploratory factor analysis yielded four theoreticallycoherent factors including: Guilt and Worry, Emotional Resources, Unresolved Sorrowand 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 scalesshow significant, positive correlations with scales from established measures of parentadjustment. Conclusion The PECI augments the current literature by providing a briefmeasure of parents’ subjective distress and perceived Emotional Resources, domains that arecritical but understudied in children with chronic illness and their caregivers.

2005

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