Parents' experiences of having children with a significant developmental disability

Participants 6 parents (2 couples and 2 single mothers) of 4 children (age range 3-6 y, 3 boys and 1 girl) participated in the study. Contributing to parents' sorrow were the possibility of the child dying, finding out about the child's changed potential, being treated as if there was a death in the family, being left on their own by others and the healthcare system, being vulnerable, having many fears and worries, and grief.