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

Abstract

A survey was sent to the American members of the National Urea Cycle Disorders Foundation to ascertain the types and extent of stress imposed on families 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 death, and the restrictions imposed by the diet. Other than removal of the economic stress and uncertainty, the results did not suggest that any specific support systems required augmentation. Instructions to mitigate frustrations occurring in emergency situations would, however, be a great help to families.

• Authors: J A Cederbaum, C LeMons, M Rosen, M Ahrens, S Vonachen, S D Cederbaum
• Journal: The Journal of pediatrics (J Pediatr) Vol. 138 Issue 1 Suppl Pg. S72-80 (Jan 2001) ISSN: 0022-3476 [Print] United States
• PMID: 11148552 (Publication Type: Journal Article, Research Support, Non-U.S. Gov't, Research Support, U.S. Gov't, P.H.S.)

Chemical References

• Urea

Topics

• Adaptation, Psychological
• Adult
• Amino Acid Metabolism, Inborn Errors (psychology)
• Child
• Family Health
• Female
• Humans
• Male
• Social Support
• Stress, Psychological (prevention & control)
• Surveys and Questionnaires
• Urea (metabolism)