Murdoch J C
J Ment Defic Res. 1983 Dec;27 (Pt 4):247-53.
A questionnaire completed by the mothers of 123 children with Down's syndrome and 109 children with Spina bifida, born over the past 10 years in Scotland has noted a marked improvement in the time of telling mothers of the diagnosis of Down's syndrome, 88% being told within a week of the birth. Only just over half of the mothers felt that the person telling them made a good job of the task, and most were told without their husband being present. Although both parents knew nothing about the particular handicap, one third of the Down's mothers and over a half of the mothers of Spina bifida children were given no further opportunity to ask more about the child or their feelings. This poor opinion of mothers on the ability of health professionals to tell them of their handicapped children indicates a need to incorporate special teaching on such situations in medical and nursing training, and to agree simple protocols within newborn units, so that such tragedies may be avoided.
一份由123名唐氏综合征患儿和109名脊柱裂患儿的母亲填写的调查问卷显示，这些孩子均于过去10年在苏格兰出生。调查指出，告知唐氏综合征患儿母亲诊断结果的时间有了显著改善，88%的母亲在孩子出生一周内就被告知。只有略超过一半的母亲认为告知她们的人做得很好，而且大多数母亲是在丈夫不在场的情况下被告知的。尽管父母双方对这种特殊的残疾情况一无所知，但三分之一的唐氏综合征患儿母亲和超过一半的脊柱裂患儿母亲没有得到进一步询问孩子情况或表达自己感受的机会。母亲们对健康专业人员告知她们孩子残疾情况的能力评价很低，这表明有必要在医学和护理培训中纳入针对此类情况的特殊教学内容，并在新生儿病房商定简单的程序，以便避免此类悲剧的发生。
