Parents of children with undiagnosed learning disorders, developmental deficits, and congenital abnormalities face a host of psychological and social challenges, which are explored in detail in a reflective article in Genetic Testing and Molecular Biomarkers, a peer-reviewed journal published by Mary Ann Liebert, Inc. (www.liebertpub.com). The article is available free online ahead of print at www.liebertpub.com/gtmb
An interview-based study of parents of children with undiagnosed disorders describes the parental experience as a "journey" comprised of an inner, emotional journey and an outer-world, sociological experience. Celine Lewis, from Genetic Alliance UK (London) and Heather Skirton and Ray Jones, from the University of Plymouth (UK), identify the primary components of this multifaceted journey in the article entitled "Living Without a Diagnosis: The Parental Experience." A commonly expressed theme among the study participants was the sense of frustration that is present throughout their experiences.
Many of the experiences described during the interviews are similar to those expressed by parents of children with known disabilities. These include the initial recognition and acceptance of the disorder and the process of pursuing a diagnosis, which are components of the inner journey. Additionally, shared social or outer-world experiences might include the interaction with members of the child's healthcare team and dealing with issues such as education and housing. The questioning and uncertainty associated with undiagnosed disorders in children adds another layer of complexity to the challenges these parents face, conclude the authors of the study.
"The article is a vivid illustration of the impact of a genetic disease, the benefit of a diagnosis, and the ongoing challenge of care to the patient and family after the diagnosis," says Kenneth I. Berns, MD, PhD, Editor-in-Chief of Genetic Testing and Molecular Biomarkers, and Director of the University of Florida's Genetics Institute, College of Medicine, Gainesville, FL.
Genetic Testing and Molecular Biomarkers is an authoritative peer-reviewed journal published bimonthly in print and online that reports on all aspects of genetic testing, including molecular and biochemical based tests and varied clinical situations; ethical, legal, social, and economic aspects of genetic testing; and issues concerning effective genetic counseling. Tables of content and a free sample issue may be viewed online at www.liebertpub.com/gtmb
Mary Ann Liebert, Inc. (www.liebertpub.com) is a privately held, fully integrated media company known for establishing authoritative peer-reviewed journals in many promising areas of science and biomedical research, including Human Gene Therapy and OMICS. Its biotechnology trade magazine, Genetic Engineering & Biotechnology News (GEN), was the first in its field and is today the industry's most widely read publication worldwide. A complete list of the firm's 60 journals, books, and newsmagazines is available at www.liebertpub.com
Vicki Cohn | EurekAlert!
Could this protein protect people against coronary artery disease?
17.11.2017 | University of North Carolina Health Care
Microbial resident enables beetles to feed on a leafy diet
17.11.2017 | Max-Planck-Institut für chemische Ökologie
The formation of stars in distant galaxies is still largely unexplored. For the first time, astron-omers at the University of Geneva have now been able to closely observe a star system six billion light-years away. In doing so, they are confirming earlier simulations made by the University of Zurich. One special effect is made possible by the multiple reflections of images that run through the cosmos like a snake.
Today, astronomers have a pretty accurate idea of how stars were formed in the recent cosmic past. But do these laws also apply to older galaxies? For around a...
Just because someone is smart and well-motivated doesn't mean he or she can learn the visual skills needed to excel at tasks like matching fingerprints, interpreting medical X-rays, keeping track of aircraft on radar displays or forensic face matching.
That is the implication of a new study which shows for the first time that there is a broad range of differences in people's visual ability and that these...
Computer Tomography (CT) is a standard procedure in hospitals, but so far, the technology has not been suitable for imaging extremely small objects. In PNAS, a team from the Technical University of Munich (TUM) describes a Nano-CT device that creates three-dimensional x-ray images at resolutions up to 100 nanometers. The first test application: Together with colleagues from the University of Kassel and Helmholtz-Zentrum Geesthacht the researchers analyzed the locomotory system of a velvet worm.
During a CT analysis, the object under investigation is x-rayed and a detector measures the respective amount of radiation absorbed from various angles....
The quantum world is fragile; error correction codes are needed to protect the information stored in a quantum object from the deteriorating effects of noise. Quantum physicists in Innsbruck have developed a protocol to pass quantum information between differently encoded building blocks of a future quantum computer, such as processors and memories. Scientists may use this protocol in the future to build a data bus for quantum computers. The researchers have published their work in the journal Nature Communications.
Future quantum computers will be able to solve problems where conventional computers fail today. We are still far away from any large-scale implementation,...
Pillared graphene would transfer heat better if the theoretical material had a few asymmetric junctions that caused wrinkles, according to Rice University...
15.11.2017 | Event News
15.11.2017 | Event News
30.10.2017 | Event News
17.11.2017 | Physics and Astronomy
17.11.2017 | Health and Medicine
17.11.2017 | Studies and Analyses