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.

Celine Lewis

Heather Skirton

Ray Jones

Genetic Testing and Molecular Biomarkers

GENETIC TESTING AND MOLECULAR BIOMARKERS 是领先的同行评审期刊，涵盖人类基因检测的各个方面，包括分子生物标志物。该杂志为新技术的发展提供了一个论坛；在越来越多的临床情况下将测试应用于决策；基因检测的伦理、法律、社会和经济方面；以及有关有效遗传咨询的问题。这是开发、执行和解释基因测试及其结果的研究人员、临床医生和科学家的权威资源。基因测试和分子生物标志物的覆盖范围包括：-整个生命周期的诊断-风险评估-个体、夫妇的携带者检测，和人群-基因检测的新方法和新仪器-分子、生化和细胞遗传学检测的结果-遗传咨询

Genetic Testing and Molecular Biomarkers is a leading peer-reviewed journal that covers all aspects of human genetic testing, including molecular biomarkers. The journal provides an important forum for the development of new technologies, discusses the application of testing in clinical decision-making, and addresses ethical, legal, social, and economic issues related to genetic testing. It also focuses on effective genetic counseling. The journal serves as an authoritative resource for researchers, clinicians, and scientists involved in the development, execution, and interpretation of genetic tests and their results. Key areas of coverage include: - Diagnostics across the lifespan - Risk assessment - Carrier testing for individuals and couples - New methods and instruments for population genetic testing - Results of molecular, biochemical, and cytogenetic testing - Genetic counseling.

《Genetic Testing and Molecular Biomarkers》是一本领先的同行评审期刊，涵盖人类基因检测的各个方面，包括分子生物标志物。该期刊为新技术的发展提供了一个重要的论坛，探讨了基因检测在临床决策中的应用，以及其伦理、法律、社会和经济方面的问题。此外，它还关注有效遗传咨询的相关议题。期刊的内容涉及基因测试的开发、执行和结果解释，服务于研究人员、临床医生和科学家。主要覆盖领域包括：- 整个生命周期的诊断 - 风险评估 - 个体和夫妇的携带者检测 - 人群基因检测的新方法和新仪器 - 分子、生化和细胞遗传学检测的结果 - 遗传咨询。

Living Without a Diagnosis: The Parental Experience

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.

Category	Quartile
生物学	4
生物学, 遗传学	4

Living Without a Diagnosis: The Parental Experience

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Journal Info

Category	Quartile
GENETICS & HEREDITY	4