Lewis Celine, Skirton Heather, Jones Ray
Genetic Alliance UK, London, United Kingdom.
Genet Test Mol Biomarkers. 2010 Dec;14(6):807-15. doi: 10.1089/gtmb.2010.0061. Epub 2010 Oct 12.
the aim of this study was to explore the parental experiences of raising a child without a diagnosis.
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.
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.
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.
本研究旨在探索未获诊断情况下养育子女的家长经历。
对通过英国一家大型地区遗传学中心招募的14位家长进行了定性半结构式访谈。访谈指南旨在探讨诸如家长何时以及为何开始寻求诊断、他们是否仍在寻求诊断，以及未获诊断导致出现了哪些心理社会问题等问题。采用扎根理论方法对数据进行了分析。
家长的经历可被视为一段旅程，它由两个不同的部分组成：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、检测经历、想要诊断的原因、情感影响以及积极的应对机制。社会问题包括与专业人员的经历、家长所利用的各种支持网络，以及教育和住房等问题。挫折问题贯穿于整个旅程。
尽管家长提到的一些经历对于养育患有已诊断疾病子女的家庭来说是常见的，但未获诊断增加了一层复杂性。
