Table 3.
Metathemes shared across all data source types | |
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1. Adults with T1D described the significant burden of planning for exercise | “I’d like to go but it takes me a good 10 or 15 minutes to do all the things that I need to do to get ready for a hike.” “And then depending on what time I’d get home from work it was time to eat dinner and I didn’t really want to go later after dinner because it’s not easy to exercise after you eat. And with the way my diabetes is I have to plan and turn my insulin pump a little bit and make sure my blood sugar’s okay before I go. And on any given day my blood sugar’s not the same.” “A lot of it is preparing for if you are doing an intense workout to load with carbs before you do anything like that.” “It’s always in the back of your mind. You’re always thinking about ‘What’s my blood sugar?’ or ‘How long am I gonna be gone for? What do I need to prepare for? What do I need to bring along?’” “It isn’t that it takes long, it’s just a lot to do. To try and think about how long I am going to be gone today, and how much I should eat before I leave. It’s the planning and everything.” “Trying to figure out how much I should eat and how much insulin to take kills my drive to exercise.” |
2. Hypoglycemia is a common barrier that causes interruption and/or cessation of workouts among adults with T1D; there is a need to check glucose levels “constantly” during workouts and plan exercise accordingly | “We’ve had to take breaks when we’re out hiking because I’ve had a low and I need to sit for a while and treat. So that’s something that’s always there and present.” “I’m not a bike rider but I knew that my legs shouldn’t have been as wobbly as they were. I was jittery and sweating madly, even though we’d been on the road for literally minutes: ‘I need to stop for a minute and have some more Gatorade.’” “But throughout the entire time I was at the gym it’s something that’s always in the back of your mind.” “And I guess that could be fear, like I don’t enjoy exercising if I know that I’m going to go low the whole time. I don’t know if that’s necessarily fear or more that I don’t want to have to deal with it.” |
3. Hypoglycemia and increased insulin sensitivity can occur with day-to-day activities that are not recognized or prepared for as exercise | “Like at the mall the other day (I should KNOW by now to do a temporary basal rate while shopping!) I was finding a spot to sit on the floor maybe just 2 minutes after saying, ‘Hmm, I don’t feel good’ and the CGM said 94. Then the very next reading it alarmed at 66.” “For the past couple of weeks I’ve been working hard on redoing our dining room. After some intense physical labor, it’s about 93% done and looking fantastic. But combine that extra activity with a monthly hormonal swing and a cold / flu thing that hit yesterday? Hello, epic lows.” “It’s finally above 30 degrees and I’m burning off buckets o’ carbs mulching and weeding the garden!” |
Themes unique to blogs | |
1. Wearing and carrying diabetes technology and supplies is a burden, but the burden can be reduced when family helps | “I love when [my husband] and I run together because I totally strap all my diabetes crap to him and use him as a pack mule too. He’s younger than me anyway, so he should definitely carry all my stuff.” “The miles might be logged a little slower than when I’m by myself, but there’s nothing more convenient than making use of her bike basket to carry all my diabetes stuff, and I love sharing some outside play moments with my daughter.” “When I started the ride, I was at 168 mg/dL, which was high enough for me to feel comfortable exercising, but not so high that I felt like I was wearing lead boots. My daughter sat in the trailer with my backpack, with the CGM receiver sitting in the front zipper pocket.” |
2. Attending organized group exercise programs for adults with T1D facilitates exercise, while also providing peer support and diabetes education; these organized programs provide opportunities for adults with T1D to exercise with others who have T1D in a supervised environment | “But core to the camp (and the campers/athletes) is the education regarding the intricate physiology of the insulin, carbs, and exercise triangle. To eat, or not to eat? To bolus, or not to bolus? To train today, or not to train today? These and all the thousands of questions we ask ourselves 24×7 are explored, tested in training, and practiced at diabetes training camp in what quickly evolves into a tight-knit and supportive group of people with a common purpose – to develop to the next level.” “There are so many benefits to having friends around that can empathize and share their own feelings with you in return. The personal growth, through networking/coping like this, is infinitely more valuable than something you could buy.” “It is the place where I can totally relax where having diabetes is both the focus and the very last thing you are thinking about. It is a second home, no matter where the geographical location. It brings together a community that somehow becomes instantly tight-knit, caring and supportive, a community that understands all of those ‘little things’ that can really get to you as a type 1.” “There is always a funny thing that happens that weekend: diabetes feels easier when you’re dealing with it in the group.” |
3. Online peer support serves as a source of encouragement to exercise for adults with T1D | “I am crazy proud of you!!!!!!” “Glad you were able to crush the lows and rock the ride, it looks beautiful.” “Good for you, getting time in for exercise when you’re a mom with type 1.” “Congratulations on finishing your first race.” “This is the stuff that inspiration and motivation is made of. I think you’re doing a great job and you certainly don’t need to be so hard on yourself. Becoming an athlete is hard work for almost everybody. :) I’m so happy for your 12-week journey!” “Do NOT beat yourself up if you’re unable to meet a particular goal—in the case you mentioned here, running all segments of your workout. I’ve been doing endurance athletics for years, and still have problems with this sometimes!” “Very inspiring post! Well done on such an amazing achievement. I have just got into cycling recently and have not yet discovered exactly what it does to my blood glucose levels, every ride differs at the moment! After reading this I will definitely keep on going, only hope that one day I have the drive to manage what you have!” |
Themes unique to interviews | |
1. Although adults with T1D face barriers to exercise unique to diabetes (eg, specific preparation needed before exercise), their greater barriers are shared by the general public, including comorbidities (especially mental health), being unmotivated, and lacking time | “That’s happened a couple times but I consider it more of a kind of depression sort of overall just the way of how I felt rather than diabetes-specific.” “And I’d say just it’s really my own psychology that is the big barrier to my exercising.” “I guess time. I just don’t have any time. Really the lack of energy and motivation is the big thing with me. It’s like I just don’t have any a lot; any motivation to do anything. It’s kind of hard sometimes.” “Well I just feel that physical exercise is a waste of time.” “If I don’t get up in the morning and I don’t do something and get it in. As the day goes on it’s harder to like fit it in.” “If I’m just not in the mood to exercise I won’t. But I feel like they’re all things that are normal and have nothing to do with diabetes.” |
2. Doing family activities outdoors is a facilitator | “I enjoy going out in the woods and hiking in particular the place that we’ve been going lately. I would rather go with [my husband], and our dog, and my daughter, than go out alone.” “My husband and I, and our daughters and our dog go out and we do that all together.” “And my daughter has been asking about going bike riding so she’s been motivating me.” |
3. While often told that exercise is essential, adults with T1D report receiving strikingly little guidance regarding how to exercise, including how to begin an exercise program or exercise safely with T1D | In response to interviewer asking “Have you gotten information about exercise from your endocrinologist or any physician?” 8 of 10 participants stated that they had not. Additional illustrative quotes follow: “I think when I was diagnosed, it was like 1992 or 1993. I remember talking about what’s going to happen when you go to gym class and you’re feeling shaky, but no—not in my adult life.” “It was just something they never mentioned or touched upon during normal appointments. It’s more ‘How are you?’ and ‘Let’s look at your bloodwork.’” “It’s never a topic of conversation, at least in my experience.” “Not within the last 10 years probably that anybody said anything about exercise.” “She keeps encouraging me to do exercise. We didn’t really have any further discussions.” “I don’t know a lot of providers who have a lot of valuable information. I think that sometimes it’s more effective when it comes from somebody who’s dealing with it themselves.” |
Themes unique to journals | |
1. Family and friends provide motivation to exercise | “My daughter asked me about going for more bike rides soon. So this conversation has inspired me to do more bike riding with her to strengthen our mother-daughter relationship as well as exercise together.” “Wasn’t going to exercise, but my mom wanted to go so we went together.” “My husband and friends have been my motivators.” |
2. Despite not identifying themselves as “exercisers” most participants did exercise nearly every day through “ordinary” activities | “Thinking of walking later today. Spent 4+ hours in yard gardening-using shovel and digging fork- squatting and bending. Blood sugar then low so no walk today.” “I did not think about exercise . . . but shoveled snow as part of my job.” “I did not exercise . . . I did clean my house and washed the windows and it took most of the day.” |
3. Usefulness of journaling | “This study helps me be very aware of my diabetes thought process.” “I think I wrote that in the little journal. I wrote ‘Oh my God I need to get out there and do something.’ I haven’t actively moved in like 4 days.” “And I’d write what I should have exercised today. But because I’m writing in the book at 9 o’clock at night, I’m like I should have did this today.” “I can’t really tell you what but I guess I learned more about being diabetic and trying to be more aware of exercising and things like that.” |
4. Adults with T1D often manage blood sugars during exercise through learning that has occurred through life experiences rather than following guidelines or HCP directions, and often do not test prior to or during exercise | “How’s my BS [blood sugar]? Should I check it? Nah—I’m fine and it’s a short walk.” “Drank a juice box as we walked. Felt a little sluggish, but didn’t test though. Felt lazy for not having tested.” “My sugar remained high [after exercise] which created some issues regarding whether I would take insulin or let myself come down naturally into range which is what usually happens when I am active.” “I tend to have the bad habit of not taking insulin before exercise to prevent lows. But then all the negative effects of high blood sugar are draining on your energy and mood.” |