Impact statements
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Patients with diabetes use online forums to share their beliefs, experiences effectiveness and harm from CAM use in diabetes.
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Lack of effective patient provider communications often leads patients to resort to online forums to find and share CAM related information.
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The findings could be utilized by healthcare providers to further engage with the patients and promote rational self-care practices including the use of CAM.
Introduction
Aim
Ethics approval
Method
Data analysis
Results
Forum name | Number of extracted posts | |
---|---|---|
Total | 359 | |
1 | www.diabetesdaily.com | 135 |
2 | forum.tudiabetes.org | 71 |
3 | www.diabetes.co.uk | 46 |
4 | abchomeopathy.com | 13 |
5 | forum.jdrf.org | 10 |
6 | www.shareayurveda.com | 8 |
7 | www.researchgate.net | 7 |
8 | www.diabetesforum.com | 6 |
9 | blog.resonanceschoolofhomeopathy.com | 6 |
10 | www.quora.com | 6 |
11 | www.homesteadingtoday.com | 6 |
12 | forum.diabetes.org.uk | 5 |
13 | forums.childrenwithdiabetes.com | 5 |
14 | www.vipassanaforum.net | 5 |
15 | www.internationalskeptics.com | 5 |
16 | www.drjoedispenza.net | 4 |
17 | healthunlocked.com | 4 |
18 | www.r2iclubforums.com | 4 |
19 | health.ccm.net | 4 |
20 | www.bogleheads.org | 3 |
21 | permies.com | 3 |
22 | www.city-data.com | 3 |
Themes | Sub-themes | Frequency of posts | |||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Herbal | Aloe Vera | Cinnamon | Ginger | Fenugreek | Black seed | Homeopathy | Acupuncture | Religious | Ayurveda | Yoga | Massage | Chiropractic | Meditation | ||
Attitude and feelings toward CAM use | Forum users express how the feel about their diabetes | 2 | 1 | 0 | 1 | 0 | 0 | 1 | 0 | 3 | 0 | 1 | 0 | 1 | 2 |
Decision making process | 3 | 1 | 1 | 0 | 0 | 1 | 1 | 2 | 1 | 1 | 1 | 1 | 2 | 3 | |
Forum users’ attitude toward the use of CAM for diabetes | 32 | 4 | 5 | 0 | 1 | 0 | 7 | 5 | 5 | 14 | 5 | 2 | 6 | 5 | |
Experiences associated with conventional medicines as a factor in forum users’ perceptions of CAM | 8 | 0 | 0 | 0 | 0 | 0 | 3 | 0 | 0 | 2 | 0 | 0 | 0 | 0 | |
Forum users convey their healthcare providers’ attitude toward CAM | 3 | 0 | 1 | 0 | 0 | 0 | 0 | 1 | 0 | 0 | 1 | 0 | 2 | 0 | |
Seeking other users’ experience with using CAM for treatment of diabetes | Seeking information | 9 | 3 | 1 | 2 | 1 | 1 | 3 | 3 | 0 | 1 | 1 | 2 | 0 | 5 |
Seeking or giving instructions about how to ‘properly’ use CAM | 4 | 0 | 3 | 1 | 1 | 0 | 6 | 1 | 1 | 1 | 0 | 0 | 0 | 3 | |
Perceived effect of CAM | Experience of CAM use | 25 | 4 | 10 | 3 | 4 | 2 | 4 | 7 | 0 | 3 | 6 | 2 | 2 | 7 |
Forum users experience an effect of CAM on diabetes while using CAM for other reasons | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 2 | 1 | 0 | |
Perception about evidence base of CAM effectiveness | Forum users’ views on scientific studies that about the effectiveness of CAM for diabetes | 9 | 0 | 0 | 0 | 1 | 0 | 1 | 2 | 0 | 3 | 0 | 0 | 0 | 0 |
Forum users giving explanations to CAM effectiveness | 2 | 2 | 0 | 0 | 4 | 0 | 4 | 0 | 0 | 1 | 6 | 3 | 0 | 2 | |
Forum users' perception on CAM safety | Perception on CAM and/or conventional medicine safety | 7 | 0 | 0 | 0 | 0 | 0 | 0 | 1 | 0 | 0 | 0 | 1 | 0 | 0 |
Using online forums to discuss CAM side effects versus conventional medicines | 4 | 3 | 1 | 0 | 0 | 0 | 0 | 1 | 0 | 0 | 0 | 2 | 0 | 0 | |
CAM as an additional or replacement treatment | Forum users' use or views on CAM as a complementary Therapy | 4 | 0 | 0 | 0 | 0 | 0 | 1 | 0 | 0 | 0 | 0 | 0 | 0 | 0 |
Forum users' use or views on CAM as an alternative Therapy | 5 | 1 | 0 | 0 | 0 | 0 | 1 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | |
Economic issues around the use of CAM for the management of diabetes | Access and cost related issues from the perspective of forum users | 2 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 1 |
Forum users’ perspective on the role of corporations on CAM recognition of CAM by medical insurers | 4 | 0 | 0 | 0 | 0 | 0 | 1 | 0 | 0 | 1 | 1 | 0 | 0 | 0 |
Attitude and feelings toward CAM use
Forum users express how they feel about their diabetes
“Type 1 diabetes is one of the issues I have that I would like get rid of but just now starting to try and figure out a way to go about it. Anything we might be able to help each other or anyone else with would be great.” (A thread about Meditation).“Basically every system that affects your bg when the weather changes or you are upset or happy… Sadly, weird things affecting our bg is the world we live in” (A thread about Herbal Medicine).
Decision making process
“In general, mindfulness can be a useful tool to help increase our ability to tolerate the stress of managing diabetes and to increase our willingness to engage in the challenges of managing it. Example: if my blood sugar is 217, I could think about how awful that is and beat myself up thinking about how it should be better and ruminate about how I keep screwing up my diabetes control. That’s probably just going to get me frustrated, depressed, and on my way to feeling overwhelmed/burned out though, and, ironically, might lead to less willingness to test next time if I know that if it’s a “bad” blood sugar, I’m going to go through all of that. I might end up avoiding testing as a result.” (A thread about Meditation).
Forum users’ attitudes toward the use of CAM for diabetes
“You said, diabetes once set, can't be reversed. This is NOT the truth- as you see the UK homeopath cured himself, and the Hpathy article talks about 15 % cured cases in the literature. You don't know who could be one of the lucky ones who are cured, and even if not totally cured well worth it to have reduced the need for medicines.” (A thread about homeopathy).
“I am pretty confident that nothing a chiropractor can do will cause the pancreas to start working again. I am also doubtful that anything they do can even change bg levels or insulin needs, no matter how "centered" they make your body.” (A thread about chiropractic).
“I think we all know it wouldn't be this easy, no magic bullet, but maybe part of a therapy that would work is all I am suggesting”. (A thread about Yoga).
Experiences associated with conventional medicines as a factor in forum users’ perceptions of CAM
“Diabetes is the silent killer disease. There is no cure from its roots to the allopath science. Many peoples are dies in world by the diabetes and its related ailments. However, Ayurveda and Panchakarma have total cure for these” (A thread about Ayurveda).
Forum users convey their healthcare providers’ attitude toward CAM
“I have been taking berberine for four or five years with good results. During that time, I have filled out "what medicines do you take?" for probably 20 doctors. Only one had ever heard of berberine” (A thread about herbal medicine).
Seeking other users’ experience with using CAM for treatment of diabetes
Seeking information
“It had never occurred to that sticking needles in one self could be beneficial for diabetics. LoL. Has anyone tried it? ” (A thread about acupuncture).
Seeking or giving instructions about how to ‘properly’ use CAM
“You need to take the right cinnamon. The kind commonly found in grocery stores, Cassia cinnamon, has a higher amount of a toxin called coumarin, which is hard on your liver. When you take amounts that simply season your food, you can metabolize it alright; but when you take therapeutic amounts for blood sugar, you ingest potentially unsafe amounts. Do some searching and make sure you take Ceylon cinnamon. It has barely a trace of coumarin. And yes, it does work to lower blood sugar. ” (a thread about cinnamon).
Perceived effectiveness of CAM
Experience of CAM use
“It helps me to be able to step back, examine my feelings. Mediation helps me to get a better perspective on what is my reality at that time and be able to accept it. For me this reduces the stresses so I can cope with my challenges.” (A thread about meditation).
“I test my blood sugar prior to leaving and it's usually around the normal range between 100-130. I do the Yoga, sweat like crazy and come home and test again and my BS has consistently been around 200-260. This seems crazy because whenever I do aerobic exercises, I'm able to drop my BS down to a normal range.” (A thread about yoga).
“My mom tried EVERYTHING to "cure" my diabetes when I was younger. I went along with the idea up til I was around 15 to "cure" the diabetes. by that time I found nothing "cured" diabetes.” (A thread about Ayurveda).
Forum users experience an effect of CAM on diabetes while using CAM for other reasons
Forum users’ perception about the evidence base of CAM effectiveness
Forum users’ views on scientific studies about the effectiveness of CAM for diabetes
“Chinese Traditional medicine doesn't seem to be helping the type 2 diabetes epidemic in China (they have surpassed the US in % of instances” (A thread about acupuncture).
“I just recently started taking berberine. I came across an article about a week ago. What have I got to lose?” (A thread about herbal medicine).
Forum users giving explanations about CAM effectiveness
What are the forum users' perceptions on the safety of CAM or/and conventional medicine
Forum users’ perceptions on CAM safety
“To me it falls into the unlikely to cause any harm category, so it might be worth giving it a try” (A thread about herbal medicine).
“Metformin did not have any effect on her blood glucose. She only got bad side effects. As her husband, I have no printable things to say about Metformin and the doctor's response to what it did to her. Practically a year of her life was wasted to the zombie effect” (A thread about herbal medicine).
Forum users use online forums to discuss CAM side effects versus conventional medicines
“My wife is type 2. I got her a massage for Christmas two years ago because she loves them. But we think she ended up with a deep tissue massage which she didn’t want. She ended up throwing up before the massage was even half done. They blamed it on her being diabetic.” (A thread about herbal medicine).
CAM as an additional or replacement treatment for diabetes
Forum users' use or views on CAM as a complementary therapy
“I don't know if the 2 together give you double the effect?” (A thread about herbal medicine).
Forum users’ use or views on CAM as an alternative therapy
“Obviously no one only you can make the decision about your tablets but I just couldn’t stand the pain I was in. and it looks as if you were having the same problems. I also was going to go to A+E but decided on a couple of day's trial without the tablets. Aloe Vera was on one of the other threads but can't remember which one, so I decided to give it a try. I've been off the tablets for about 4 weeks now and feel great. And haven’t had a bad reading since, but as I said I did tell the doc I wasn’t happy with them, but I didn’t say anything about the Aloe I just started taking that myself after reading the good reports.” (A thread about Aloe vera).
Economic issues around the use of CAM for the management of diabetes
Access and cost related issues from the perspective of forum users
“When I needed diabetes meds, I considered it, but cost kept me away. My metformin was only $1.99 for a 3 month supply” (A thread about herbal medicine).
Recognition of CAM by medical insurers
“I would like to know whether a proper cure for Diabetes Type I and II is going to be reality in coming years. As I can see we have genome sequence, we have identified gene, SNPs in the gene and then proteins which are switched on or off due to this. What else is needed to find a cure? Or is it as they say "There is cure but no one wants to kill the golden goose”” (A thread about Ayurveda).