Psychosocial issues and coping strategies in families affected by urea cycle disorders

A survey was sent to the American members of the National Urea Cycle Disord ers Foundation to ascertain the types and extent of stress imposed on famil ies who have a child with a urea cycle defect. Forty percent of the surveys were returned. The greatest sources of stress were financial, fear of deat h, and the restrictions imposed by the diet. Other than removal of the econ omic stress and uncertainty, the results did not suggest that any specific support systems required augmentation. Instructions to mitigate frustration s occurring in emergency situations would, however, be a great help to fami lies.