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How Much "Smarter Than a Doctor" Are the Parents of Diabetic Children?
8 May 2008
"Insulin Quiz: Are You Smarter Than a Doctor" (April-May '08, pp 12-15) was an excellent article, if perhaps a little frightening. I couldn't help but wonder how well the parents of diabetic children would do on the quiz, and where they might have learned their lessons.
Type 1 diabetes is a 24/7 disease, and make no mistake, the primary care giver for children is their parent(s). They need to be experts almost from the day of onset, but their education has some special difficulties:
- They are not able to hear the educator's message. For the first few days/weeks all they can hear is, "How can this have happened to my child?" reverberating inside their heads. They appear to be listening, but they're not.
- It's very hard to learn all about a complicated disease, especially if you've had no medical training. We need the diabetes educator to remember to say, "low blood sugar level" instead of "hypoglycemia."
- Parents of newly diagnosed children are seldom told about complications. The reasons are: a) There is too much to cover to include it with the information needed immediately; b) complications aren't going to happen right away; c) not everyone gets all the complications; and d) it’s no fun to give bad news.
The effect is as successful as not telling children about sex. Questions and misinformation lurk and grow in the shadows. At the very least, parents deserve to know that there are complications in the future, and where to get good information when they are ready to deal with them. - On the other hand (which brings us back to the article), how does the now well-educated parent/primary caregiver prevail in a hospital situation when he/she is more knowledgeable about the patient than the large number of medical staff members cited in your quiz? This is a most common problem, requiring the utmost diplomacy. Nursing staff, interns and residents, especially, are not inclined to presume a competent parent.
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I do not agree that parents of newly diagnosed children need to be told about complications. It is not necessarily true that complications are in the future for all people with diabetes. There is so much information to absorb at diagnosis. While I am not naive, I do believe parents of newly diagnosed children can be reasonably optimistic about their children's future given the newest tools and insulins available. There is absolutely no need to state all the possibilities that may or may NOT happen in a person's lifetime. Further, it would behoove the medical profession to teach parents how to cut off the ugly stories that the public will feel compelled to share, often in front of the children.
Diagnosis is a time when optimism and positive empowerment is a much better approach to help parents learn to cope and ultimately discover their family's "new normal".
Give the parents resources to get accurate information such as the Children With Diabetes website www.childrenwithdiabetes.com.
Parents of newly diagnosed children can ask to be connected with an experienced parent of a child with diabetes for support simply by phoning the Diabetes Research Institute Foundation at 1-800-321-3431 and ask for someone from the PEP Squad to contact them. For more information: http://www.diabetesresearch.org/Newsroom/NewsReleases/DRIFoundation/pepsquad.htm
Ellen
No doctor,
who doesn't live with a T1 diabetic,
knows more about living with diabetes
than a parent, of moderate intelligence,
with a T1 child.
I WOULD LIKE TO ENCOURGE PARENTS OUT THERE WHO HAVE CHILDREN WITH TYPE 1 DIABETES. MY PARENTS WERE A BIG HELP TO ME, THEY GOT EDUCATED ABOUT THE DISEASE AND THEN HELPED ME SINCE I WAS 9 (1964) TO DEAL WITH IT ALL THROUGH MY SCHOOL YEARS, DON'T OVER PROTECT THEM THEY NEED TO LEARN TO LIVE WITH IT AND TAKE CARE OF THEMSELVES AND KEEP THEMSELVES UNDERCONTROL. A SIMPLE STATEMENT OF NEED TO TAKE CARE OF YOURSELF NOW, IT WILL HELP YOU IN THE FUTURE.
AS THEY GET OLDER THEY WILL READ AND FIND OUT AS THERE MINDS MATURE THIS WILL HELP THEM HANDLE ALL THE INFORMATION THAT IS OUT THERE THAT IS SCARY. KEEP A POSITIVE FOCUS.
GILBERT, ARIZONA
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