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青少年囊性纤维化患者的自我形象。

Self-image of adolescents with cystic fibrosis.

机构信息

, .

出版信息

J Youth Adolesc. 1980 Dec;9(6):521-8. doi: 10.1007/BF02089888.

Abstract

Cystic fibrosis (CF) is a lethal genetic disease, yet improved care has extended the mean age of survival into the young adult years. Many of the surviving adolescents have respiratory and digestive problems which delay growth and sexual development. It has been suggested that the specter of fatal disease interferes with adjustment to adolescence. We administered the Offer Self-Image Questionnaire to three groups with mean height less than the fifth percentile: CF males aged 12-19 (n=16); CF females aged 12-19 (n=8); and otherwise healthy males with short stature and/or delayed puberty aged 13-19 (n=34). The values obtained were compared to published normative data for a large number of normal adolescents and a smaller number of adolescents actively undergoing treatment for emotional disorders. CF males showed an abnormal pattern of adjustment that could be considered comparable to disturbed males and to growth-delayed and sexually delayed males. The CF female group was concordant with the normal population, rather than with the emotionally disturbed population. Thus CF and pubertally delayed males have a self-perception of maladjustment to the psychologic problems of adolescence. This suggests that adjustment problems of the CF male may be related to growth retardation and pubertal delay, the social stigma of which may be more easily disguised in the female. This is important in health care, since recent evidence suggests that exemplary attention to medical compliance and nutrition may ameliorate some of the growth lag both in pubertal delay and CF.

摘要

囊性纤维化 (CF) 是一种致命的遗传疾病,但改善的治疗方法已经将平均生存年龄延长到了青年时期。许多幸存的青少年都有呼吸道和消化系统问题,这些问题会延迟他们的生长和性发育。有人认为,致命疾病的威胁会干扰他们对青春期的适应。我们向三组身高低于第五百分位数的患者发放了《奥弗自我形象问卷》:12-19 岁的 CF 男性(n=16);12-19 岁的 CF 女性(n=8);以及 13-19 岁的身材矮小和/或青春期延迟的健康男性(n=34)。我们将获得的数值与大量正常青少年和少量正在接受情绪障碍治疗的青少年的发表规范数据进行了比较。CF 男性表现出一种异常的适应模式,可以被认为与情绪紊乱男性以及生长迟缓且性发育延迟的男性相似。CF 女性组与正常人群一致,而不是与情绪紊乱人群一致。因此,CF 和青春期延迟的男性对青春期的心理问题有自我认知的失调。这表明 CF 男性的适应问题可能与生长迟缓及青春期延迟有关,而后者的社会耻辱感可能更容易被女性掩盖。这在医疗保健中很重要,因为最近的证据表明,对医疗依从性和营养的出色关注可能会减轻青春期延迟和 CF 中某些生长滞后的情况。

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