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Journal of Pediatric Psychology Advance Access published online on January 9, 2006
Journal of Pediatric Psychology, doi:10.1093/jpepsy/jsj097
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© The Author 2006. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oxfordjournals.org
Received May 2, 2005
Revised September 30, 2005
Accepted December 3, 2005

Article

Condition-Related Knowledge Among Children with Spina Bifida: Longitudinal Changes and Predictors

Rachel Neff Greenley PhD 1, Rachael Millstein Coakley PhD 2, Grayson N. Holmbeck PhD 3 *, Barbara Jandasek MA 3, and Karen Wills PhD 4

1 Case Western Reserve University
2 Children’s Hospital, Boston
3 Loyola University Chicago
4 Children’s Hospital, Minneapolis

* To whom correspondence should be addressed.
Grayson N. Holmbeck, E-mail: gholmbe{at}luc.edu


  Abstract

Objective To examine changes in three domains of condition-related knowledge among youth with spina bifida and to examine the utility of youth cognitive ability level and condition severity as predictors of knowledge change. Methods Seventy preadolescents with spina bifida completed a 12-item questionnaire assessing knowledge of spina bifida at three time points during middle childhood and early adolescence. Specific domains of knowledge assessed included (a) etiology of spina bifida, (b) functional status, and (c) shunt functioning (completed by participants with shunted hydrocephalus only). Results Findings revealed gains in accuracy of knowledge on 6 of 12 items; however, neither children’s cognitive ability level nor condition severity predicted changes in knowledge over time. Most condition domains were characterized by low-to-moderate levels of knowledge across time. Conclusions Although significant gains were evident in children’s condition-related knowledge, at Time 3, many participants still failed to understand basic information about the etiology of their condition or major functional issues associated with spina bifida. Additional education about catheterization and shunt malfunction are two domains that may be of particular clinical significance.

Keywords: adolescence; chronic illness; condition knowledge; spina bifida; understanding of condition.
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