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非致死性软骨发育不全的一些社会心理方面:I. 使用生活方式问卷进行评估。

Some psychosocial aspects of nonlethal chondrodysplasias: I. Assessment using a Life-Styles Questionnaire.

作者信息

Hunter A G

机构信息

Department of Genetics, Children's Hospital of Eastern Ontario, University of Ottawa, Canada.

出版信息

Am J Med Genet. 1998 Jun 16;78(1):1-8. doi: 10.1002/(sici)1096-8628(19980616)78:1<1::aid-ajmg1>3.0.co;2-v.

Abstract

Studies concerning the psychosocial aspects of skeletal dysplasias that cause disproportionate short stature have been few and have usually involved small numbers of patients. As part of a study involving patients with chondrodysplasias and their families, an assessment battery of standardised instruments designed to measure depression, anxiety, self-esteem, personal support networks, marital adjustment, and family structure were completed by patients and, in many cases, their sibs, spouses, and/or parents. This first in a series of six papers reports the results of a Life-Styles Questionnaire which provides some insights into the levels of satisfaction with various aspects of life, including friendships, employment, the use of some substances and services, and the impact of the skeletal dysplasia on career, marriage, and childbearing. Results are presented for patients and the unaffected parents of patients. Overall, the study has shown a high level of satisfaction with many aspects of life. However, there are important differences in attitudes between the married and unmarried patients, and in some cases the unaffected parents, in a number of areas including health, overall satisfaction with life, and concerns surrounding child bearing and employment.

摘要

关于导致身材不成比例矮小的骨骼发育异常的社会心理方面的研究很少,而且通常涉及的患者数量较少。作为一项涉及软骨发育异常患者及其家庭的研究的一部分,患者以及在许多情况下他们的兄弟姐妹、配偶和/或父母完成了一系列旨在测量抑郁、焦虑、自尊、个人支持网络、婚姻调适和家庭结构的标准化评估工具。这一系列六篇论文中的第一篇报告了生活方式问卷的结果,该问卷对生活各个方面的满意度水平提供了一些见解,包括友谊、就业、某些物质和服务的使用,以及骨骼发育异常对职业、婚姻和生育的影响。文中呈现了患者及其未受影响的父母的结果。总体而言,该研究表明对生活的许多方面都有很高的满意度。然而,已婚和未婚患者以及在某些情况下未受影响的父母在包括健康、对生活的总体满意度以及围绕生育和就业的担忧等多个领域的态度存在重要差异。

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