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Journal of Pediatric Psychology Advance Access originally published online on September 28, 2007
Journal of Pediatric Psychology 2008 33(4):422-434; doi:10.1093/jpepsy/jsm077
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© The Author 2007. 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

Parental Distress, Family Functioning, and Social Support in Families with and without a Child with Neurofibromatosis 1*

Jennifer Reiter-Purtill, PhD1, Elizabeth K. Schorry, MD2, Anne M. Lovell, MSN, RN, NS, PNP2, Kathryn Vannatta, PhD3, Cynthia A. Gerhardt, PhD3 and Robert B. Noll, PhD1

1Children's Hospital of Pittsburgh, University of Pittsburgh, 2Cincinnati Children's Hospital Medical Center and the University of Cincinnati College of Medicine, and 3Columbus Children's Research Institute and The Ohio State University

All correspondence concerning this article should be addressed to Robert B. Noll, Children's Hospital of Pittsburgh, Child Development Unit, 3705 Fifth Avenue, Pittsburgh, PA 15214, USA. E-mail: robert.noll{at}chp.edu


  Abstract

Objective To compare parental adjustment, social support, and family functioning between families of children with neurofibromatosis 1 (NF1) and a group of demographically similar comparison families, and to examine the impact of disease severity. Methods Questionnaires were completed at home by parents of 54 children with NF1 (54 mothers and 42 fathers) and 51 comparison children (49 mothers and 32 fathers). Results Few differences between groups were identified for parental distress, social support, or family environment. Greater neurological impairment in children with NF1 was associated with greater distress, more family conflict, less positive mealtime interactions, and less social support from the perspectives of mothers. Conclusions Overall, parents of children with NF1 appear similar to parents of comparison children. Mothers who have children with NF1 characterized by greater neurological impairment may be at risk for more difficulties. Future work exploring long-term adjustment for these mothers as well as interventions to ameliorate any potential difficulties may be appropriate.

Key words: disease severity; family functioning; neurofibromatosis; parents.

*Portions of this article have been presented at the Biannual Meeting of the Society for Developmental and Behavioral Pediatrics, April 2005 and at the Annual Meeting of the Society for Developmental and Behavioral Pediatrics, September 2006.

Received October 4, 2006; revision received July 27, 2007; accepted August 9, 2007


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