Parental distress, family functioning, and social support in families with and without a child with neurofibromatosis 1 |
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| Authors: | Reiter-Purtill Jennifer Schorry Elizabeth K Lovell Anne M Vannatta Kathryn Gerhardt Cynthia A Noll Robert B |
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| Affiliation: | 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 |
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| Abstract: | Objective To compare parental adjustment, social support, andfamily functioning between families of children with neurofibromatosis1 (NF1) and a group of demographically similar comparison families,and to examine the impact of disease severity. Methods Questionnaireswere completed at home by parents of 54 children with NF1 (54mothers and 42 fathers) and 51 comparison children (49 mothersand 32 fathers). Results Few differences between groups wereidentified for parental distress, social support, or familyenvironment. Greater neurological impairment in children withNF1 was associated with greater distress, more family conflict,less positive mealtime interactions, and less social supportfrom the perspectives of mothers. Conclusions Overall, parentsof children with NF1 appear similar to parents of comparisonchildren. Mothers who have children with NF1 characterized bygreater neurological impairment may be at risk for more difficulties.Future work exploring long-term adjustment for these mothersas well as interventions to ameliorate any potential difficultiesmay be appropriate. |
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| Keywords: | disease severity family functioning neurofibromatosis parents. |
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