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My name is Michelle Litchman. I am a doctoral student at the University of Utah College of Nursing. For my dissertation research I am examining online peer-to-peer health among individuals with diabetes. I am interested in knowing the relationship between the intensity to which someone is involved with TuDiabetes and their health. Currently, there is very little research about the Diabetes Online Community and peer-to-peer health.
I will be gathering data through a confidential survey that can be accessed online. The survey takes about 30 minutes to complete. Please link to the survey here. I will donate $2, up to $1000 maximum, to the Diabetes Hands Foundation for every survey that is completed.
Once the data has been analyzed, I will follow-up with the TuDiabetes community to share my findings. Thank you in advance for your participation.
Michelle Litchman, MS, FNP-BC
University of Utah PhD Student
This survey is approved by the TuDiabetes Administration.
I'm sorry, I started taking this survey but did not complete it; in part because it was just too long. But also because I thought some of the questions were irrelevant to the topic, wildly general, borderline insulting, and hard to answer in any meaningful way. Some examples: Am I LADA or Type 1? LADA is Type 1. Income? Sorry not something I'm going to share with someone posting on a message board. Health questions: It never asks what other conditions you might have, so there is no way to ascertain whether health constraints you might describe are related to D. Ditto questions about pain. Questions about emotional issues: Same thing; many of the questions don't say "due to diabetes or even "since diabetes" so how to differentiate anxiety/depression or other emotional issues that are not diabetes related. The questions about things like "am I more open to people different than myself since I've come on TuDiabetes"? Is this implying that people can't be open to people different than themselves before having come to TuD and for reasons unrelated to TuD or diabetes? The questions regarding doctors and "diabetes care". The only form of diabetes care I get from a doctor is the writing of prescription. There was no way to put that. Then the questions about various qualities of both doctors and TuD. Moral? Unintelligent? Caring? These are subjective descriptions with little standardized meaning. And in terms of TuD - an organization of 25,000 individuals it has no meaning at all! There are probably people who are moral, immoral, bright, unintelligent, sensitive, uncaring - all the above in those 25,000. How can you answer about "TuD" in general?
Personally I have seen a lot of studies and understand how rigorous a design needs to be in order to show the connections it proposes to show. If I answer that I'm in constant pain and I have trouble completing daily activities, for example, and this is because I have let's say fibromyalgia, then this says nothing about how learning about Diabetes on TuD impacts my health.There are no indicators of causal relationships. Sorry this study is all over the place and the results will be as well.
You're right, it's pretty poorly designed. For example, on rating your healthcare provider and the DOC, sometimes the "positive" answer is #1 and sometimes it's #7. That could be confusing and result in wrong answers to some questions, simply because the person hasn't taken the time to read carefully. And for a doctoral student, it would have been nice if she'd proofread her questionnaire, just because misspellings are unprofessional. And there is no way for her to know whether someone is just jerking off the questionnaire for their own amusement.
I know -- you came up with solid criticisms, and I'm talking like an old high-school English teacher, but I know my stuff, too! :-)
Yep, me too. Fibromyalgia and arthritis and thyroid disease. Was hoping for a place to comment on that in the survey.
Am I LADA or Type 1? LADA is Type 1.
True, but T1's diagnosed as kids in deep DKA may have a different take on things than those diagnosed with T1 as adults. Maybe more of a social distinction but that might be more important than an actual medical distinction.
Oh, I agree with that Tim. I started a Type 1 women's group and the members contained both those diagnosed early in life and those later in life. There were definite differences in the experience and the outlook of the two groups, but, especially as we got to know each other our similarities seemed more than our differences.For me,five years in and three since my correct diagnosis, I just think of myself as Type 1. The only time the distinction matters is when I'm relating to someone newly diagnosed (or misdiagnosed). Even though most Type 2's are closer to my own 60s age group, I feel I have more in common with other Type 1's even ones who are 40 years younger!
I completed the survey, I don't think the questions about "morality" or "caring," etc. are great, but they are probably from a previously validated measurement tool, so I don't really have a problem answering them.
I do agree with Zoe that because so many people with diabetes have so many co-morbid conditions that are related to but not CAUSED by diabetes (ex: thyroid issues, celiac disease, other autoimmnue disorders), this survey will be missing a big chunk of information with regard to people's ability to participate in ADLs and whether or not diabetes has anything to do with that. But, since the survey is just looking at "health outcomes" in general, making the distinction between "diabetes health outcomes" and "general health outcomes" probably doesn't make that big of a difference.
Not trying to be critical at all. I'm very glad that people are researching this and taking interest in this subject and the diabetes OC. The more people studying us/diabetes, the better. It will be cool any way to find out the relationship between participation in tudiabetes and ANY health out come, anyway.
I did the survey too. I had some objections to some of the questions but I think that it's better to answer them. But maybe I'm in different place and don't mind waving some of my "antlers" around as much. I'd have liked the opportunity for some words. In terms of the questions about Tu, I answered them in terms of how I find the dialogue on the "forums" as that's my favorite part. What are your goals in attacking the survey? Sure, I could razz it too but what do I get out of that? I'd like there to be a finding that the DOC has some value so maybe my answers are skewed. If we attack these surveys, we are left with doctors.
I guess I'm just very sensitive to how studies can be used to state anything, when really there is no connection between what they set out to prove and reality. I don't like sloppy science. Yes, I agree with the conclusion that the DOC in general and TuD in particular make our Diabetic lives better in so many ways. I agree with that with all my heart. Which is why I want any studies that attempt to show that to be valid studies that can't be torn apart by the powers that be that think the DOC is "unprofessional nonsense". Sloppy research will just feed into that belief.
I will take the survey as soon as I can. I think this sort of research can be valuable. While I expect that people who participate actively in the DOC will have better outcomes, people that make an effort at anything related to their health are more likely to do other things that improve their health. It is for this reason that many studies that have high dropout rates are flawed, the patients that remain must be "devoted" to their health and they are likely to take better care of themselves and skew the study results.
One real area that I do think would be an important result is anything that might reveal about how the DOC leads to better informed patients, pointing to areas beyond "support" and highlighting areas where the medical profession is actually failing us. One example of this is dietary advice and the conflicting information on carb restricted diets. I feel like virtually all my health teams have all been horribly misinformed on diets and only on-line was I able to find the facts.
I kind of felt that way about how I feed my dog. I have been doing raw feeding of all my dogs since I have had them. All the vets are taught by purina or Hill's science diet and haven't a clue about nutrition. I think the same applies to dietary advice to us. Basically it is as if the CDE's, Endorks (thank you AR), and nutritionists all went to classes given by the Pillsbury company. That is if they went to nutrition classes at all.
Judith, while yes I am sweet, I was more commenting to the lack of adequate nutrtional education both in the medical and veternarian communities. I was amazed when I took my dog in to the vet and she asked what I feed him because his teeth are sparkling white, his breath doesn't stink, and his coat is shiny. I said BARF (biologically appropriate raw food) or meat and bones. She immediately went in to a tirade about how bad that was for him and how he should be on kibble with grains etc he could get salmonella. I found another vet very quickly.
I think it is the same with the medical community. Endo's and CDE's in particular because I think in order to become a CDE you actually have to go to nutrional classes to learn what we D's should eat and in what proportions. I just think those classes are still 25 years behind the time and once analog insulins came out and pumps became more automatic and cgms became more the norm than the exception, D's were encouraged to "just eat whatever we want so long as you bolus for it".