Some critical research can only be done on the recently-diagnosed. Unfortunately, with all the shock and confusion, many parents and T1s don’t know anything about the research and are very hesitant to participate so early in the process of learning about the disease. Any thoughts on how to recruit the parents, the kids, the adults with T1, or get the doctors and nurses to recruit study participants so early?
Also, if you have had diabetes for a while, or you are the parent or spouse of a T1, what do you know now that you wish had been explained to you during the first few weeks? What would have helped? Were you ready to hear more?
Thanks in advance for your responses!
I was so focused on why this was happening I really missed some of the education and training I got in the first few weeks. I had some real scary lows while trying to manage the 24 hour inuslin with the fast acting insulin. Caregivers were trying to be supportive, but by not verifying that I was really capable of learning my own care “on the job” they inadvertantly put me at risk. I really did not understand what was required of me until I switched to the pump and got a ton of one-on-one training and data. T1’s should always see the endro or diabetic specialist as early in the process as possible, and those meetings should be numerous at first in order to insure the information needed is reinforced. I think you are on the right track with the internet for recruitment as that was the first place I looked for information after diagnosis. You need to outline the study and method so folks know you are legitimate. I’ve been a research volunteer with Mass General for a couple of years and some renumeration (can be just a couple of bucks) does sweeten the pot! As for the spouse response, I’ll pass this on to him. Good Luck.
Thank you! You were very responsive! I’d love to hear from your spouse. -Chris