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Journal of Pediatric Psychology Advance Access published online on May 25, 2005
Journal of Pediatric Psychology, doi:10.1093/jpepsy/jsj034
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Journal of Pediatric Psychology © The Author 2005. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oupjournals.org
Received October 18, 2004
Revised April 13, 2005
Accepted April 19, 2005

Article

Development and Validation of the Parent Experience of Child Illness

Melanie J. Bonner PhD1*, Kristina K. Hardy PhD2, Ann B. Guill MDN3, Colleen McLaughlin MSN, CPNP3, Holly Schweitzer BS3, and Karen Carter BA3

1 Division of Medical Psychology, Duke University Medical Center; The Brain Tumor Center at Duke, Duke University Medical Center
2 Division of Medical Psychology, Duke University Medical Center
3 The Brain Tumor Center at Duke, Duke University Medical Center

* To whom correspondence should be addressed.
Melanie J. Bonner, E-mail: bonne002{at}mc.duke.edu


  Abstract

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.

Keywords: measure development; parent adjustment; pediatric neuro-oncology.
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