Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

Unexplained childhood disorders

14.10.2010
How parents cope with daily challenges and an uncertain future

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

Mary Ann Liebert, Inc. 140 Huguenot St., New Rochelle, NY 10801-5215
Phone: (914) 740-2100 (800) M-LIEBERT Fax: (914) 740-2101
www.liebertpub.com

Vicki Cohn | EurekAlert!
Further information:
http://www.liebertpub.com

More articles from Life Sciences:

nachricht New insights into the information processing of motor neurons
22.02.2017 | Max Planck Florida Institute for Neuroscience

nachricht Wintering ducks connect isolated wetlands by dispersing plant seeds
22.02.2017 | Utrecht University

All articles from Life Sciences >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: Breakthrough with a chain of gold atoms

In the field of nanoscience, an international team of physicists with participants from Konstanz has achieved a breakthrough in understanding heat transport

In the field of nanoscience, an international team of physicists with participants from Konstanz has achieved a breakthrough in understanding heat transport

Im Focus: DNA repair: a new letter in the cell alphabet

Results reveal how discoveries may be hidden in scientific “blind spots”

Cells need to repair damaged DNA in our genes to prevent the development of cancer and other diseases. Our cells therefore activate and send “repair-proteins”...

Im Focus: Dresdner scientists print tomorrow’s world

The Fraunhofer IWS Dresden and Technische Universität Dresden inaugurated their jointly operated Center for Additive Manufacturing Dresden (AMCD) with a festive ceremony on February 7, 2017. Scientists from various disciplines perform research on materials, additive manufacturing processes and innovative technologies, which build up components in a layer by layer process. This technology opens up new horizons for component design and combinations of functions. For example during fabrication, electrical conductors and sensors are already able to be additively manufactured into components. They provide information about stress conditions of a product during operation.

The 3D-printing technology, or additive manufacturing as it is often called, has long made the step out of scientific research laboratories into industrial...

Im Focus: Mimicking nature's cellular architectures via 3-D printing

Research offers new level of control over the structure of 3-D printed materials

Nature does amazing things with limited design materials. Grass, for example, can support its own weight, resist strong wind loads, and recover after being...

Im Focus: Three Magnetic States for Each Hole

Nanometer-scale magnetic perforated grids could create new possibilities for computing. Together with international colleagues, scientists from the Helmholtz Zentrum Dresden-Rossendorf (HZDR) have shown how a cobalt grid can be reliably programmed at room temperature. In addition they discovered that for every hole ("antidot") three magnetic states can be configured. The results have been published in the journal "Scientific Reports".

Physicist Dr. Rantej Bali from the HZDR, together with scientists from Singapore and Australia, designed a special grid structure in a thin layer of cobalt in...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

Booth and panel discussion – The Lindau Nobel Laureate Meetings at the AAAS 2017 Annual Meeting

13.02.2017 | Event News

Complex Loading versus Hidden Reserves

10.02.2017 | Event News

International Conference on Crystal Growth in Freiburg

09.02.2017 | Event News

 
Latest News

Positrons as a new tool for lithium ion battery research: Holes in the electrode

22.02.2017 | Power and Electrical Engineering

New insights into the information processing of motor neurons

22.02.2017 | Life Sciences

Healthy Hiking in Smart Socks

22.02.2017 | Innovative Products

VideoLinks
B2B-VideoLinks
More VideoLinks >>>