Educating yourself about your child's condition, options for treatment, locating treatment centers and support groups is one of the best things you can do to help you make informed decisions about your child's health and care. You will find that there are many resources available to you but you need to seek out those resources.
Many parents have a difficult time finding the information they need to assist them in learning everything they can about their child's diagnosis, care, and available resources. The best strategy we can recommend is, ASK QUESTIONS! If you are not sure you understand what your physician is telling you, ask them to repeat it or explain it in such a fashion you can understand. And don't limit your question asking to just your family physician or pediatrician! There are many places you can go to get good, quality information.
Libraries: Many University hospitals or Medical Centers have medical libraries attached to their facilities for research. Because these are teaching facilities they must have that information available for their students. But what most people do not know is that the information is available to parents of patients as well. Many hospitals have library facilities on the premises.
If you are at a larger teaching facility, especially one affiliated with any University, feel free to go down to the information desk in the lobby and find out from the clerk where the library is. They do have professional librarians whose sole job and responsibility is to assist individuals who are looking for information. They should have references regarding any of the medical diseases, procedures, diagnoses, and just about anything else you could think of that might be going on in that facility.
*Note: Linda highly recommends the Hardin Library for the Health Sciences at the University of Iowa. You can find further contact information at the link below.
Internet: Medical librarians are also an excellent resource to use when trying to figure out which Internet sites are good and which are not. Not all Internet web sites are accurate when it comes to medical information. Do not use school-type encyclopedias as a reliable medical resource. The Internet can be an invaluable tool but you need to be very, very cautious when you are utilizing the Internet for research. Current diagnostic information listed on AMA (American Medical Association) sites may not be included on other specialty sites appearing as legitimate medical resources. Always check your source! There are several excellent links listed on the National Resource Links list.
Care Professionals: The third place that you can go to for information is any other care professionals that will be directly involved with the care of your child. This may be a physical therapist, an occupational therapist, a speech therapist, a nurse, any other physicians, some of the lab physicians/technicians, radiologists. All of those people are excellent resources for information on certain aspects of your child's condition and situation. It is certainly permissible to ask questions of any of those persons. (Don't forget your Q&A sheet)
Clinical Social Worker: Another person to ask for information would be the hospital's licensed clinical social worker (LCSW). These people are excellent resources. They are connected to all of the information regarding services outside of the hospital that you may need once you (your child) are discharged.
You should be able to get this information at the hospital just simply by asking. If your child is an inpatient, the charge nurse should be able to direct you to the LCSW assigned to that floor or facility. If not, simply call the hospital and ask for the licensed clinical social worker and they can switch you right through to that office. That would be an excellent place to start.
Other Parents: many parents end up spending a great deal of time sitting in waiting rooms while waiting for their turn in a hospital lab, therapy clinic or treatment clinic. You'll often find many other parents who are in similar situations keeping you company while you wait. Don't be afraid to strike up a conversation, if you feel comfortable. Ask other parents about some of their experiences, recommendations and where they go for services and assistance. You may be surprised at how much you can learn from an experienced parent. A thoughtful, polite, question may result in good information and, if you are lucky, another parent with whom you may be able to network. Don't be afraid to strike up a conversation.
*Note: Linda recommends keeping a pencil and a small pad of paper in a purse, pocket etc. at all times. They come in very handy for jotting down notes and contact information. Be prepared!
(Click on "RESOURCE LINKS" for more information.)