Quine L, Pahl J
Dev Med Child Neurol. 1987 Apr;29(2):232-42. doi: 10.1111/j.1469-8749.1987.tb02141.x.
This paper reports the results of interviews with 190 parents of severely mentally handicapped children. Questions were asked about parents' satisfaction with the way they were first informed of the child's impairment. Most parents were informed by a doctor, and almost two-thirds were dissatisfied with the first information given. Satisfaction was associated with being told early in the child's life. There was a significant association between the time of telling and the diagnostic condition of the child: parents of children with handicap of no known pathology were more likely to be told during or after the second year of the child's life, while parents of children with Down's syndrome were most likely to be told at birth. The authors discuss ways in which parents can be helped through this difficult time and suggest procedures for breaking the news to parents in a sensitive way.
本文报告了对190名重度智障儿童家长的访谈结果。询问了家长对首次得知孩子残疾方式的满意度。大多数家长是由医生告知的，近三分之二的家长对最初得到的信息不满意。满意度与在孩子幼年时被告知有关。告知时间与孩子的诊断状况之间存在显著关联：病因不明的残疾儿童的家长更有可能在孩子出生第二年期间或之后被告知，而唐氏综合征患儿的家长最有可能在孩子出生时被告知。作者讨论了如何在这段艰难时期帮助家长，并提出了以敏感方式向家长透露消息的程序。
