The emotional effects of genetic diseases: Implications for clinical genetics
The emotional effects of genetic diseases: Implications for clinical genetics
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DOI：
10.1002/ajmg.a.32013
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发表时间：
2007-11-15
影响因子：
2
通讯作者：
MacLeod, Rhona
中科院分区：
文献类型：
--
作者：
McAllister, Marion;Davies, Linda;MacLeod, Rhona
这项定性研究的目的是探讨可能是常见的许多遗传条件，或遗传条件的风险，可以适当地针对临床遗传学服务的情绪影响。研究样本包括52人。七个焦点小组与临床遗传学服务的患者，他们的代表从患者支持组织和遗传医疗服务提供者进行了。焦点小组补充了19个面对面的采访病人和病人群体的代表。焦点小组和访谈录音，全部转录，并使用不断比较的方法进行分析。遗传疾病的八种情绪影响被确定为：焦虑、担心孩子的风险、内疚、愤怒、不确定性、悲伤和悲伤、抑郁和救赎性调整。确定了两个因素，可以改变情绪的影响，这些是遗传疾病的变异性，缺乏诊断/不适当的照顾。尽管遗传疾病的许多负面影响正在确定，结果也表明，赎回调整是可能的遗传条件存在于一个家庭。旨在（1）调整修改条件和（2）帮助管理情绪影响的干预措施可能有助于调整和改善患者结局。(C)2007 Wiley-Liss，Inc.
The aim of this qualitative study was to explore the emotional effects that may be common to many genetic conditions, or risk of genetic conditions, that could be appropriately targeted by clinical genetics services. The study sample comprised 52 individuals. Seven focus groups with patients of clinical genetics services, their representatives from patient support organizations and genetics healthcare providers were conducted. Focus groups were supplemented by 19 face-to-face interviews with patients and patient group representatives. Focus groups and interviews were audio taped, transcribed in full, and analyzed using the constant comparative method. Eight emotional effects of genetic diseases were identified: anxiety, worry about risks to children, guilt, anger, uncertainty, sadness and grief, depression, and redemptive adjustment. Two factors were identified that could modify the emotional effects; these were variability of genetic diseases, and lack of diagnosis/inappropriate care. Despite many negative effects of genetic disease being identified, results also suggest that redemptive adjustment is possible where a genetic condition is present in a family. Interventions designed to (1) adjust the modifying conditions and (2) help manage the emotional effects may facilitate adjustment and improve patient outcomes. (C) 2007 Wiley-Liss, Inc.