Perception of burden among at-risk women of raising a child with fragile-X syndrome.

On a self-administered questionnaire 31 women at-risk for bearing children with fragile-X syndrome (FXS) were asked to judge the magnitude of the problems they perceived to be associated with raising an affected child. An age- and education-matched group of women with no family history of FXS was asked to predict the seriousness of problems they might encounter were they to bear a child with a handicapping condition. Mothers of children with FXS reported that they were experiencing fewer and different problems than FXS relatives who did not have affected children predicted they themselves would experience. The perceptions of the burden of raising a handicapped child of FXS relatives without affected children were more similar to those of the comparison group than to those of FXS mothers. This suggests that women who raise a child with FXS learn to cope with an unchangeable situation, and consequently their perceptions of the burdens ease with time. A direct relationship between the acceptability of selective abortion and the perceived seriousness of the problems associated with having an affected child was observed.