Down’s Syndrome and the Family

Summary

The family has a profound influence on the development of all children and those with Down’s Syndrome are no exception. However, children with lasting handicap do differ from normal children in their effect on the family.

The characteristics of Down’s Syndrome have particular implications for the family. The chromosomal abnormality is well known and regarded as the “cause.” The appearance means relatively easy recognition but this can lead to both adaptive and maladaptive reactions in the family.

The degree of mental retardation varies and is influenced by environment, particularly by the quality of mothering and of educational provision. The presence of associated physical abnormalities affects the morbidity and mortality and hence the emotional strain and physical burden on the parents.

As non-disjunction is associated with increased maternal age, there is a bias towards certain types of families, particularly towards larger families and towards those of women who started child-bearing late.

Data are presented from studies on families of Down’s Syndrome children. Two major types of effect on the families have been noticed. One type includes those attributed to the grief that is universally experienced by families but is resolved in different ways and with varying degrees of success. The second type is attributable to the practical reality of bringing up an affected child. The adverse effects on parents are most clearly shown in a deterioration of the marriage relationship. Sisters are more vulnerable than brothers, particularly in families with many other problems.

From the findings of the studies, it appears clear that good educational provision starting early in the life of the child and adequate relief care can alleviate the practical problems of the families but there are some emotionally vulnerable families who have major difficulties coping with the grief of having a handicapped child.