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

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. Neurofibromatosis (NF1), an autosomal dominant genetic disorder, has a prevalence rate of 1/2,000 to 1/5,000 (Rasmussen & Friedman, 2000). Clinical features includ