My name is Caitlyn and I am currently a Graphic Design Senior at the University of Massachusetts Dartmouth and working on my Thesis project.
OK, what does this have to do with Diabetes?
My Father was diagnosed with Type 1 Diabetes at a young age, 13 I think, and had every complication associated with it. He had a full kidney transplant when he was 19, he went blind at 24 three months before I was born, had both legs amputated at 34, and numerous reactions, seizures, heart problems, etc. I grew up learning how to care for him, and myself, throughout his life and mine. I became educated in the subject at a young age when I was left home with him in case of emergencies, and I was always a daddy's girl. He passed away about 4 years ago due to an unconscious reaction at 45 years old, and fought and defied all the odds when they said he would die before I was even born.
OK, now what does this have to do with my Senior Thesis project?
My father inspired me in so many ways, and growing up in that environment has shaped me into the person I am now. Though, looking back on it, My mother, my Brother, my Father and I could have all been much more prepared.
My father was diagnosed long before there were some of the things there are now, such as Insulin Pumps, and it was 15 years ago when I learned about how to care for a diabetic, so a lot of things have changed since then. But there is a way to prevent some of these long term causes from the disease, help avoid them before they become as bad as they can be.
My project is a sort of "care project" That would ideally go out to a person diagnosed, as well as the families, with Type 1 (Or Type 2) Diabetes. Yes, it has been done - but I am a design student, not a medical or psychology student. My project will focus on a lot of design aesthetics and problem-solving for visual attraction, functional use, and practicality from a different perspective than those in the medical field - a creative designer who has lived through it.
Now, if you had the patience to sit though all of that, here is where I need your help. What would you want to see in a "care package"? I know, they throw 50,293,498 pounds of information at a person when they are diagnosed, but I want this to be something different, not overwhelming, I want it to be organized, I want people who WANT to read and be educated on it, not feel like they HAVE to (even though they do).
Anyway, it's been about 8 or 9 years since I have seen what they give at clinics, so I don't know what is being done now, but I would love feedback.
Have you gotten any really great informational pieces when you or a loved one was diagnosed that really helped you through?
Is there something you never got that you really would have been helpful?
Is my project dead in the water?
While it's been a while since I've gotten this sort of paper stuff, I do remember from what I have received in the past that it was pretty well presented. Here is the fundamental problem for many people newly diagnosed - there is no consistent information out there for people. Many folks online (and in some clinics) believe in low carb, some organizations push much higher carb.
I personally think that some documentation explaining what the tests mean (fasting glucose, random glucose, a1c, what the levels should be, GAD antibodies, etc) and how they can change and what they imply. I think there should be better information about the drug options as well (metformin, glyubride, januvia, insulin, etc) as well as forms of treatment (diet, exericse, med options).
Some good background information is often lacking. Many folks leave with a script and instructions to take it and that is it. I think that in many cases it is more a matter of content, and not of form. Maybe something that could be personalized for someone? That would be cool. A doctor could use a piece of software that could use the patients data and treatment schedule and then print out a few pages of background info on what the blood work means and all about the prescription.
Well, as usual, Cora has said it way better than I could!
The one other thing I'd add in there is a bit of information about food...for example, that most food contains carbs, the difference between high-glycemic and low glycemic foods, maybe some broad guidelines for recommended average total daily intake of carbs for men/women and how to split those up over the day. Many people are just told "don't eat sweets", which is not very helpful. Also, just a bit about how high fat content can slow the absorption of carbs and cause raised blood sugars long after the two-hour post-prandial mark. And, speaking of post-prandial, a quick explanation of that and advice on testing after meals to see how various foods impact an individual's blood sugar levels.
I also think a key factor is to have sections, so all the information isn't mixed in together, with a good table of contents and a good index.