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唇腭裂患者及其家长的态度和担忧问卷调查

Questionnaire survey of attitudes and concerns of patients with cleft lip and palate and their parents.

作者信息

Noar J H

机构信息

Institute of Dental Surgery, London, England.

出版信息

Cleft Palate Craniofac J. 1991 Jul;28(3):279-84. doi: 10.1597/1545-1569_1991_028_0279_qsoaac_2.3.co_2.

Abstract

The self-perceived problems and concerns of patients with complete unilateral cleft lip and palate and their parents were investigated. Thirty-two patients ranging in age from 16 to 25 years (mean = 19.9 years) and their parents were sent questionnaires by mail. Twenty-eight patients and 30 parents completed the questionnaires. The results suggest that the patients were satisfied with the treatment they had received. They believed that the efforts of the members of the cleft palate team had been successful, and they were generally satisfied with their overall facial appearance and speech. There were, however, specific aspects with which they were less satisfied; their nose, lip, profile, speech, and teeth. They did not feel significantly socially or emotionally handicapped, although they noted that they had been teased and that they found relations with the opposite sex difficult. Their parents were also generally satisfied with all aspects of treatment and their child's appearance and speech. They identified those areas that their child was most concerned with, but did not fully appreciate how satisfied their child was with his or her facial features. The parents felt that their children were socially and emotionally affected by their cleft and felt their school results had also been affected.

摘要

对单侧完全性唇腭裂患者及其父母自我感知的问题和担忧进行了调查。通过邮件向32名年龄在16至25岁之间(平均19.9岁)的患者及其父母发送了问卷。28名患者和30名父母完成了问卷。结果表明,患者对他们所接受的治疗感到满意。他们认为腭裂治疗团队成员的努力是成功的,并且他们总体上对自己的面部外观和语音感到满意。然而,他们对某些特定方面不太满意,比如鼻子、嘴唇、侧脸、语音和牙齿。尽管他们提到曾被取笑且觉得与异性交往困难,但他们并未明显感到在社交或情感上有障碍。他们的父母总体上也对治疗的各个方面以及孩子的外貌和语音感到满意。他们指出了孩子最关心的那些方面,但并未充分意识到孩子对自己面部特征的满意程度。父母们觉得他们的孩子在社交和情感上受到腭裂的影响,并且认为孩子的学业成绩也受到了影响。

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