Nursing Implications question!

i don't understand why google didn't help?

i just came up with sev'l results, if you google "marfan syndrome" + nursing.

best of luck.

leslie

I have all of that information. Now I am looking for something specific. I haven't found any information that gives me information on the actual implications and interventions that a nurse is responsible for with marfan syndrome and genetics! Thanks for the help though!

Megan

quite frankly, i dont see where as a nurse you have any responsibility as to the genetics....that would be the doc or a genetist.....also, a fair number of Marfans are not genetic, but congenital.....

I may be simplifying what you are asking for but... wouldn't interventions/implications be teaching about s/s and avoiding complications? Avoiding strenuous activities as to avoid an aoritc tear, cardio assessments, s/s of the disease progressing... etc..

I have all of that information. Now I am looking for something specific. I haven't found any information that gives me information on the actual implications and interventions that a nurse is responsible for with marfan syndrome and genetics! Thanks for the help though!

Megan

Megan - The National Marfan Foundation, has free information that is specific to nurses. Even though you are looking for information specific to newborns, you may be able to pull out some information that you can apply to that situation from the NMF's new CD ROM specifically for school nurses. Go to the National Marfan Foundation website (www.marfan.org) to find out how to get it. Or, you can call the NMF's Information Resource Center (800-8-MARFAN, ext 26) and talk to the nurse who staffs that number.

Even though other specialists may have primary responsibility, the nurse plays a vital role. So many doctors don't recognize the signs of Marfan syndrome, even when the baby is the first in the family to be affected (and the signs may not be prominent at birth). Also, in so many cases, the affected parent might not know he/she is affected. (Half of those with Marfan syndrome in the U.S. do not know that they have the disorder.)

If you need anything else, post here and I will check back.

I may be simplifying what you are asking for but... wouldn't interventions/implications be teaching about s/s and avoiding complications? Avoiding strenuous activities as to avoid an aoritc tear, cardio assessments, s/s of the disease progressing... etc..

I am parenting a suspected Marfan's patient, so probably have a slightly more "Momma" than "RN" take on this one. But, that being said, this post is on the right track.

Other things to be aware of are psychological implications (which will vary w/ age of the patient), safety r/t length of limbs, lack of co-ordination as they grow, pre-pregnancy counseling for perspective parents (realizing it is hereditary), physiological changes that will impact the pregnant woman (if she is the one w/ Marfan's)

HTH - Good-luck w/ your search and your presentation.

nurses assist the patient by referring them to appropriate counseling and by providing literature or other education to alleviate knowledge deficit. They need to be aware of symptoms of disease progression and when to notify the MD. You may need to involve other disciplines such as social worker, ophthalmogist consult (lens subluxation a problem with these patients) and grief counseling (for chronic disease diagnosis).

What could go "wrong" while patient is in your care? What would you look for on EKG or chest x-ray results? Labs? These are all clues as to what a nurse would do.