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ASSESSING THE IMPACT OF A CHILD WITH SPINA BIFIDA ON THE FAMILY
Authors:Marie C. McCormick,Edward B. Charney,Margaret M. Stemmler&dagger  
Affiliation:*Department of Pediatrics, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, PEHSR, Room 420,3440 Market St., Philadelphia, PA 19104.;†Clinical Epidemiology Unit, Department of Medicine, University of Pennsylvania School of Medicine, PEHSR, Room 420,3440 Market St., Philadelphia, PA 19104.
Abstract:This study examined the characteristics of families which may be more vulnerable than others to the impact of caring for a child with spina bifida. Morbidity and the use of health services were unexpectedly high. The impact on the family was related less to clinical diagnoses than to the characteristics of the child's functioning in the home and of the family. Major predictors of greater impact on the family were the number of the child's activities of daily living, parental perceptions of the child's health, low maternal educational attainment, low family income, the number of adults in the family, insurance status, the number of visits to a doctor in the month before the interview, and whether the adults in the family were employed. These results reinforce the need for assessments to include the child's function in the home, and for additional resources to help some families care for their child.
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