CHILDREN WITH MYELOMENINGOCELE - THE IMPACT OF DISABILITY ON FAMILY DYNAMICS AND SOCIAL CONDITIONS - A NORDIC STUDY

Family dynamics and social conditions were studied of 527 children wit h myelomeningocele aged four to 18 years from Denmark, Finland, Norway and Sweden; the control group was a representative sample of 7792 chi ldren of the same age-range and from the same countries. Information w as obtained from postal questionnaires and from patients' charts. Over all, there were more similarities than differences between index and c ontrol families, the major difference occurring in measures related to the mothers' situation. Variations within groups of index families we re in many respects more important than differences between index and control families. In spite of the different welfare systems developed to support families with disabled children, this study clearly showed that the responsibility for the care of the disabled child still lies primarily with the mother. Increased efforts must be made to meet the needs of these mothers.