COUNSELLING ABOUT DOWN'S SYNDROME: THE PARENTS' VIEWPOINT

Abstract

The parents of SO children with Down's syndrome were interviewed to find what sort of information they were given at the time of diagnosis and what arrangements were made for the child's future. Particular emphasis was placed upon the method and timing of giving the parents the diagnosis, the utilization of community resources to help the family and what information they would have liked to have been given in retrospect. The ages of the children ranged between three months and eight years at the time of the survey. Seventy‐two per cent of parents were given the diagnosis during the first week, with an increasing proportion being dissatisfied with the timing the longer the delay in telling what was wrong with the child. The mother has been told first in 48% of cases, and both parents have been told together in only 20% of cases. Fifty‐four per cent of parents were encouraged to take the baby home, 22% were encouraged to place the baby in an institution, while in 28% of cases the decision was left to them. Forty‐six per cent of patients felt that an overly‐pessimistic outlook had been given by the doctor. Eighty‐four per cent had medical follow‐up, community follow‐up, or literature supplied, whereas 16% had no such arrangements made. The parents' own suggestions for better management were sought The two most outstanding were to be placed in early contact with community facilities and to be given a chance to meet other parents of children with Down's syndrome.