Table 2.

Attitudes, Behaviors, and Experience of ‘Lived Expertise’ in Type 1 Diabetes

Theme	Attitudes, Behaviors and Experiences that Illustrate Theme	Select Illustrative Quotes
Survivor mentality	• Resilience, patience, persistence, grit, creativity and resourcefulness in the face of diabetes challenges • Pride and gratitude for surpassing management and survival expectations • Hope and optimism for future care advances and improved self-management	“Either live with it, or you die with it. One or the other. I have been diabetic for 62 years and I’m still ticking. You just basically do what you have to do and just adjust as you go.” (I4, T3) ”[Needles] used to make me throw up. I was that bad about needles. I hated needles. When they told me I was a diabetic and I had to take shots, I said to the doctor, ‘So what happens if I don’t?’ He said, ‘You’ll feel bad the first day, you’ll feel really bad the second day, and the third day, you’ll be dead.’ I thought, ‘That’s not really what I wanna do’, so I started taking shots, and I did really well up until the point I was at five shots a day.” (I1, T7) “On my 40th birthday, my mother told me that a doctor told her when I was 14, that if I took really good care of myself, I could live to be 40, but he would expect me to be dead by the time I was 40…he was giving me 26 years.” (I2, T7) “I keep asking [Dexcom]. I keep calling. The people are wonderful, they really are attentive to the need [of older adults], and it works. Maybe someday when I get a little older, I’ll be able to do it without help, but not yet.” (I1, T1)
Self-reliance and self-advocacy are essential for acute survival and long-term survivorship	• Advocating for preferences and needs • Being own support system • Becoming expert in and asserting expertise about own disease • Questioning clinician authority in diabetes decision-making	“I’m in charge of my diabetes. You have to be your own advocate.” (I3, T2) “My support system is myself. I am married. I’ve been married 47years. My husband, the only thing he’s every known to do is to get me juice if he sees me sweating or if I start acting funny in the bed and shaking”. (I3, T2) “You have to be able to take what you got for information and make an assessment on how your body functions. That’s one thing about diabetes is you have to learn how your body functions, not hers, his, or hers. It’s your own. (I4, T3) “I essentially realized I had to become my own doctor and [not just to] understand what doctors were saying, but to have a higher level of conversation with the doctors to improve my care.” (I4, T2) “There’s nobody who knows the patient better than the patient. They [doctors] often don’t believe us. Sometimes, we’re wrong, but they at least need to listen” (I5, T2)
Theme	Attitudes, Behaviors and Experiences that Illustrate Theme	Select Illustrative Quotes
Trust and distrust are fundamental to self-management choices and are rationally rooted in experience	• Needs and preferences underrepresented in research, device development and marketing • The evidence of survivorship reinforces current behaviors and resistance to change • Clinicians inadequately consider self-identified needs and priorities • Repeated receipt of sub-optimal diabetes care when hospitalized • Technology inaccuracies, malfunctions, and supply unpredictability are common threats • Altering self-management routine introduces real health risks • Lack of caregiver diabetes competency and involvement • Living through the history of diabetes care increase and decrease trust of technological advances	“When I first got my CGM, they said, “Watch this video of this little girl putting on her CGM,” and I thought, that’s not me [laughter]…that’s not me trying to do it. It’s her daddy doing it to her, and it just—those kind of things didn’t translate” (I2, T7) “[Older adults] they need to [be] brought in and sat down to see if they really want it. Then you tell them how it’s going to work and how it’s going to help them. You have to almost show them because most older adults, they feel like, “I’ve gotten to this age because I know whatI’m doing.” (I2, T4) “I’ve been to some [providers] that were not as open to my health concerns. I said, “I can’t stay here.”…so I just moved right along.” (I4, T8) “That sensor, I was tryin’ to change it myself. I just got so frustrated because he [my husband] was not available, and my daughter wasn’t available. I’m sayin’, ‘to heck with it’” (I4, T8) “I3: Sometimes, it tells me that I’m low and dangerously low. Low, low, low, low. I’m like, what the heck? I know I’m not low. I just drank juice 30minutes ago….” I5: Yeah…because your Dexcom reads interstitial glucose…it’s always gonna be slower. I can’t tell you the number of times that Dexcom has read higher than the glucometer or lower than the glucometer, which is the wrong way around, so go figure.” (T2)
Growing recognition of need to relinquish control to resources outside the self to maintain control with age	• Worry about declining ability to self manage and increasing need to rely on caregivers and technology • Changes in dysglycemia signs, hypoglycemia unawareness, physical strength and dexterity, scar tissue, food absorption, and insulin resistance • Aging-related physical changes increase receptivity to and complicate device use	“The older you get, if you don’t have a caregiver.. Like my mom, she died when she was 90. She was just tired. She was tired of doing all what she had to do to keep her health good” (I4, T6) “What finally convinced me was reading stories about how, as you get older, your chances of having a really severe debilitating low blood sugar go up, which totally surprised me. I would have thought that, you know, ‘Hey, man. I don’t have all that hormonal stuff going on [anymore]’.” (I3, T3) “Me, now, aging, [I’m] more brittle than I was… now, the alarms, for me, is a safeguard.” (I4, T8)
Theme	Attitudes, Behaviors and Experiences that Illustrate Theme	Select Illustrative Quotes
Defined relationships between diabetes and identity	• Articulated diabetes-related goals and priorities • Fixed intention not to let diabetes dominate life • Forgoing care approaches that reduces privacy or elevates diabetes to a higher priority than preferred • Controlling disclosure of disease status • Prioritizing public self-care behaviors over social perception • Distancing self from with those with type 2 diabetes, those with sub—optimal management, and those who complain • Avoiding social judgement and differential treatment	“If it [the way I’m self-managing] isn’t broke, there’s nothing to fix…if we need to have a discussion over my goal or I’m not reaching my goal or whatever, then let’s talk about that, but as long as I’m reaching goal and I’m happy with my life and my experience trying to manage this disease on a daily basis, then let’s leave well enough alone.” (I3, T7) “I am still very much in a horse and buggy era. It’s my temperament. and I’m a little resistant to—like people wanna know things …why do you want to know so much?” (I1, T1) “Do you go out of your way to make sure people don’t know you’re diabetic? ‘Cause I do…I don’t want anybody to know. I’m okay, and I don’t want people somehow feeling sorry for me or saying, no, you can’t do that…” (I2, T7) “I did not wanna be the poster child for type I diabetes, so—I don’t deny it. I won’t if somebody asks me. I’m happy to admit it, but I don’t go around advertising myself. It’s not in me, ‘cause I’m a very—I’m private, too, and it’s none of anybody’s business.” (I3, T7)
Diabetes is dynamic within individuals over time and between individuals	• Continuous unpredictability, disappointment, and imperfection in symptoms and management • Differences in bodies, minds, goals, priorities and preferences • Living through the history of diabetes care increases and decreases receptivity to care advances • Optimal care approaches are temporary and must vary within and across people	“You know, “I’m eating the same stuff I ate yesterday, but my blood sugars, they’re not completely gone [out of range], but they’re much higher. What’s going on?” (I2, T3) “I’ve had diabetes since August of 1969. My goal at diagnosis was—because I was fairly familiar with diabetes—was to not let this disease impact my life any more than it absolutely needed to. I don’t use a pump. I don’t use CGM. I have been at goal for 20 years, just with the tools available—the really basic tools available, and frankly, I like it that way “ (I3, T7) “A lot of illnesses and disease, you pretty much treat ‘em all the same. One thing I found about diabetes is just totally different from one person to the other person” (I1 T6)
Theme	Attitudes, Behaviors and Experiences that Illustrate Theme	Select Illustrative Quotes
Diabetes outcomes and mindset continuously interact to create positive and negative self-management cycles	• Positive self-perception and feelings of success when achieving clinical targets • Self-deprecation and feelings of failure when facing diabetes challenges • Self-doubt, self- interrogation, and self-judgement about self-management choices • Denial, avoidance, and “flakiness” undermine self-management • Competitive and “control freak” mindsets promote self-management	“One of the things that occurs to me is something that really underlies all of this, is the attitude I had about my diabetes from the very first day I got it” (I2, T7) “The better control you have, the better you feel about yourself” (I2, T1) “I’m a good girl. You ask Dr. [Name], she tells me I’m her number one patient, that I have the best readings of all her patients” (I4, T6). “I was not a technology guy, and then I’m trying to do this, the CGM monitor, and the phone, and that’s when I think I just got overwhelmed because I thought this was supposed to help, and right now, it’s just—it’s overwhelming my very simple mind” (I1, T7) “I got frustrated, and then I said I think I’m a failure and quit” (I1, T7) “You wonder, am I being stupid when the doctor says ‘you should try one’ and I say I don’t need it” (I2, T7) “Some people are gonna have a permanent denial. I’ve seen it. My father died of diabetes because he just simply didn’t wanna take the shots. I sat there and I took three, four shots every day all the time, and he wouldn’t do it. He saw what it did for me, and he just wouldn’t do it.” (I4, T3)
Theme	Attitudes, Behaviors and Experiences that Illustrate Theme	Select Illustrative Quotes
Technology increases and decreases diabetes burden	• Decreased workflow related to glucometer use; increased workflow related to ordering and maintaining supplies, inserting and changing devices, and navigating insurance; increased anxiety about device failures and supply shortages • Increased security, confidence, freedom in sleep and daily activities; Increased convenience and integration of self-management into lifestyle; Increased distraction, awareness of self-management imperfection and fragility • Increased self-knowledge, actionable information, and proactive self-management; Increased impatience, expectation of instant gratification, and information overload • Increased caregiver understanding and ability to respond; increased social intrusion and judgement • Decreased finger sticks and injections; Increased discomfort from device insertion and physical bulk	“I3: Self-confidence in any daily activity, whether it’s camping –you’ve got your backup system. You’ve got your system to warn you of the lows and the highs, and you know how to take care of it …I know I can go for a three mile run ‘cause I’ve got this thing to help me. I know I can drive to the beach by myself because I’ve got this system. I5: It’s flying solo, right? I3:Yeah. Flying solo.” (T2) “[CGM] helps us to become more in tune to our bodies” (I2, T3) “I felt more in control of my life. I had a feeling of security.” (I3, T9) “‘I’ve become more brittle. It’s made me more aware I’m brittle…[it] causes more anxiety and, sometime, limits my freedom where I would’ve just continued because before [when] I [just] had my pump, I would check my finger before and after. See, now, it’s a constant reminder”. (I4, T8) “The first is, it’s a piece of equipment hanging off me 24 hours a day. The second is, the flood of data that I am getting 24 hours a day that I must cope with…I don’t wanna live that way…that was my thing, was, ‘I have one more thing’, ‘cause I already had the pod, and then I was gonna have to do this other thing and try to make sure all that was working”. (I3, T7) “What do I do when I go to an airport? Do I take it out? Do I put it—should I put everything in my pocketbook? Should I go through with it on? Should it go through the—in a suitcase? What should you do? ‘Cause you don’t know what to do. You don’t want to screw something up.” (I1, T2)
CGM and other technologies areactive, multi-component interventions rather than passive and automated systems	• Understanding the values vs. the trendlines • Learning to react, and not overreact, to readings • Appropriate interaction with the technology is always changing, requiring ongoing acquisition of skills to maintain benefits	“What was hard is trying to remember that…the graph on the Dexcom is telling me what has happened to some extent, but not as reliably as I would like it to be. It’s telling you what’s going to happen if it’s got an upward arrow or a double whammy north or south, but that’s still an estimate.” (I5,T2) “Let’s just say there’s 10 things that are affecting how you’re gonna react to this particular meal, or whatever. You might have information about six of them. There is gonna be a lot of variability, day-to-day, meal-to-meal.” (I3, T3) “It’s a learning curve…we aren’t the same every day, all day.” (I1, T3)

Abbreviations: I – Interviewee. T – Transcript.