General Information

For a look at general information about Down Syndrome including pathophysiology, signs, symptoms, and common complications, the National Down Syndrome Society is a great resource. http://www.ndss.org/index.php

The National Institute of Child Health & Human Development also has a great general educational site about Down Syndrome that includes patient teaching information in Spanish. http://www.nichd.nih.gov/health/topics/down_syndrome.cfm

Clinical Implications for Down Syndrome

For a more in-depth look at the role of medical and nursing professionals in caring for those with Down Syndrome, MedScape today has posted research articles with clinical practice guidelines for patients with Down Syndrome. These can be viewed at http://www.medscape.com/viewarticle/532190_1 (You will need to log in to MedScape to view this, but most of us already have the free accounts...) These guidelines change very rapidly and are often updated based on current research. This is a great example of the success of evidence-based-practice. In fact, due greatly to improved medical and nursing care, the average life expectancy for a baby born with Down Syndrome has increased from 25 years in 1983 to 56 years today!

Education & Certification for Healthcare Professionals Working with Down Syndrome Patients

There are specialized courses and certifications available for healthcare professionals who want to be better equiped to work with Down Syndrome patients. An example of an on-line course (we all love on-line courses!!) offered by the Down Syndrome Research Foundation can be found at http://www.dsrf.org/index.cfm?fuseaction=programs.schedule&eventid=291

Ethical Issues Related to Down Syndrome

Of course we all know that there are pre-natal tests aimed at detecting Down Syndrome as early as the first trimester of pregnancy. The PBS show Religion and Ethics News Weekly has a very good report regarding this testing and the ethical considerations regarding parent's decision to abort or not when a prenatal test for Down Syndrome is positive. You can read the transcript of the report or watch the video at http://www.pbs.org/wnet/religionandethics/week931/cover.html
Knowledge and understanding of these types of ethical issues are very important for nurses who may be caring for families facing these issues.

Patient Education and Teaching

There is a great need for nursing professionals to be able to intervene and advocate for patients with Down Syndrome and for parents who have received a new Down Syndrome diagnosis for their newborn or unborn child. There is current research indicating that members of the medical profession have been found lacking in advocacy and support when presenting a diagnosis of Down Syndrome to parents (see article at http://www.hno.harvard.edu/gazette/2005/03.03/27-down.html). These findings indicate an urgent need for nurses to step in and "fill the gap". Patient teaching materials can be found at: http://ghr.nlm.nih.gov/condition=downsyndrome/show/Educational+resources