Living Without a Diagnosis: The Parental Experience
Living Without a Diagnosis: The Parental Experience
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DOI：
10.1089/gtmb.2010.0061
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发表时间：
2010-12-01
影响因子：
1.4
通讯作者：
Jones, Ray
中科院分区：
文献类型：
--
作者：
Lewis, Celine;Skirton, Heather;Jones, Ray
目的：本研究的目的是探讨父母在没有诊断的情况下抚养孩子的经历。方法：对通过英国大型区域遗传学中心招募的 14 名家长进行定性半结构化访谈。访谈指南旨在研究诸如父母何时以及为何开始寻找诊断、他们是否仍在寻找以及由于没有诊断而出现的心理社会问题等问题。使用扎根理论方法分析数据。结果：父母的经历可以被视为一个旅程，它由两个不同的组成部分组成：内在的情感体验和外在的社会学体验。构成情感旅程的问题包括意识到存在问题、测试经历、想要诊断的原因、情绪影响和积极的应对机制。社会问题包括专业人士的经验、家长获得的各种支持网络以及教育和住房等问题。沮丧的问题是整个旅程中出现的一个问题。结论：虽然父母引用的一些经历对于养育患有确诊疾病的孩子的家庭来说很常见，但缺乏诊断增加了一层复杂性。
Aim: The aim of this study was to explore the parental experiences of raising a child without a diagnosis. Method: Qualitative semistructured interviews were conducted with 14 parents recruited through a large Regional Genetics Centre in the United Kingdom. The interview guide was designed to examine issues such as when and why parents started searching for a diagnosis, whether they were still searching, and what psychosocial issues had arisen as a result of not having a diagnosis. Data were analyzed using the Grounded Theory method. Results: The parental experience can be viewed as a journey, which comprises of two distinct components: the inner, emotional experience, and the outer, sociological experience. Issues that comprise the emotional journey include the realization that there is a problem, the experience of testing, reasons for wanting a diagnosis, the emotional impact, and active coping mechanisms. Social issues include the experience with professionals, the various support networks accessed by parents, and issues such as education and housing. The issue of frustration was one that occurred throughout the journey. Conclusion: Although some of the experiences cited by parents are common to families raising a child with a diagnosed condition, lack of diagnosis adds a layer of complexity.