Quine L, Pahl J
Soc Sci Med. 1986;22(1):53-62. doi: 10.1016/0277-9536(86)90308-4.
This paper presents data from a study of 190 parents and discusses their reactions to being told that their child was likely to be severely mentally handicapped. Dissatisfaction was related to the child's age when the parents were first told about the impairment, which was itself related to the diagnosis of the child's condition. Parents of children with non-specific handicap were often not informed about the impairment until the second or third year of the child's life, while parents of children with Down's Syndrome were usually informed within a week of birth. The paper compares these two groups of parents and discusses the reasons for their dissatisfaction. The study showed that parents valued early acknowledgement of the problem, a sympathetic approach on the part of medical professionals, and the sharing of information and uncertainty. The reasons why parents of mentally handicapped children may continue to feel dissatisfied are discussed in the light of the theoretical literature on doctor-patient communication.
本文展示了一项针对190名家长的研究数据，并讨论了他们在得知自己的孩子可能有严重智力障碍时的反应。不满情绪与家长首次被告知孩子有缺陷时孩子的年龄有关，而这本身又与孩子病情的诊断相关。患有非特异性障碍的孩子的家长通常直到孩子两岁或三岁时才被告知孩子有缺陷，而唐氏综合征患儿的家长通常在孩子出生一周内就得到了通知。本文比较了这两组家长，并讨论了他们不满的原因。研究表明，家长重视对问题的早期确认、医疗专业人员富有同情心的态度以及信息和不确定性的共享。本文结合医患沟通的理论文献，讨论了智障儿童家长可能持续感到不满的原因。
