Barriers to healthy behaviors: perspectives from teens with comorbid Type 1 diabetes and overweight/obesity, caregivers, and pediatric endocrinologists

Abstract

Objectives

This study aimed to understand barriers to engagement in healthy lifestyle behaviors among adolescents with comorbid Type 1 diabetes (T1D) and overweight/obesity (n = 12), their caregivers (n = 12), and pediatric endocrinologists (n = 9).

Methods

Participants (n = 33) completed individual, semi-structured interviews. Interviews were transcribed verbatim, and applied thematic analysis was used to analyze the interview data.

Results

Results from adolescents, caregivers, and pediatric endocrinologists revealed three thematic barriers to healthy lifestyle behaviors for adolescents with T1D and overweight/obesity: (1) discomfort with aspects of T1D that draw attention to the self; (2) T1D as a barrier to engagement in healthy lifestyle behaviors; and (3) physiological dysregulation due to T1D impacting health behaviors.

Conclusions

Results identify perceived limitations to engaging in recommended healthy lifestyle behaviors and diabetes management concurrently. Results may assist research and clinical care in identifying supports and guidance needed to support adolescents in meeting behavioral recommendations for their health.

The prevalence of youth with Type 1 diabetes (T1D) continues to increase, with a 45.1% relative increase in its prevalence over the past 16 years (Lawrence et al., 2021; Mefford et al., 2023). Adolescents with T1D exhibit higher average HbA1C compared to other age groups and significant detrimental changes in diastolic blood pressure, peripheral vascular function, and cardiovascular structure, all of which have been shown to predict subsequent cardiovascular events (Atkinson et al., 2014; Bradley et al., 2016; Miller et al., 2018; Pambianco et al., 2006). Obesity prevalence among youth with T1D now exceeds that of youth in the general population (Prinz et al., 2018). Obesity is associated with an increased risk for cardiovascular disease independent of T1D, compounding the cardiovascular risk associated with T1D. Further, insulin dosages increase with body weight, and intensive insulin treatment is associated with weight gain (The Diabetes Control and Complications Trial Research Group, 2001). Persons with T1D and comorbid obesity can experience a cycle of weight gain followed by increased insulin requirements leading to a higher risk of insulin resistance.

The American Diabetes Association (ADA) recommends engagement in healthy lifestyle behaviors to decrease the risk of obesity, insulin resistance, and cardiovascular risk (American Diabetes Association Professional Practice Committee, 2024). Daily healthy lifestyle behavior guidelines for all youth include at least 60 min of physical activity, 8-10 hr of sleep, at least 5 servings of fruits and vegetables, and less than 2 hr of sedentary screen time (US Department of Health and Human Services, 2018, 2020). Engaging in these behaviors can reduce cardiovascular disease risks, improve energy, and reduce risk of all-cause mortality (US Department of Health and Human Services, 2018, 2020). For youth with T1D, meeting these goals can have added benefits, such as improved insulin sensitivity, reduced episodes of hypoglycemia, and delayed postprandial excursions (American Diabetes Association Professional Practice Committee, 2024). Yet, fewer than 35% of youth with T1D meet the national recommendations for exercise and fewer than 10% meet recommendations for fruit and vegetable consumption (Lange et al., 2021; Thomas et al., 2004). McCarthy et al. determined that adults with higher body mass index (BMI) and longer T1D duration were more likely not to engage in any physical activity (Driscoll et al., 2017; McCarthy et al., 2016). This is problematic as exercise has been well-established to improve insulin sensitivity, glucose intake, and reduced cardiovascular mortality (Absil et al., 2019). Additionally, youth with T1D often experience more sleep disturbances compared to those without T1D, and these disturbances can have negative implications for glycemic stability, cognitive function, and psychosocial outcomes such as higher depressive symptoms, behavioral difficulties, and lower grade point averages in school (Caruso et al., 2014; Hazen et al., 2015; Perez et al., 2018; Perfect, 2014). In their meta-analysis, Reutrakul et al. (2016) determined that adolescents with T1D exhibited an average of 27 min shorter sleep duration compared to peers without diabetes, and reduced sleep duration can negatively impact executive function, critical for diabetes management.

There is a dearth of literature on facilitators and barriers to engaging in modifiable lifestyle behaviors among youth with T1D, particularly with regard to weight management. Adolescents have previously reported feeling food cravings specific to “forbidden foods” and/or foods high in carbohydrates, and subsequently feeling guilt after eating these foods (Kahkoska et al., 2018). These same youth discussed the difficulty with moderating hunger/fullness, specifically during hypoglycemic episodes, hyperglycemic episodes, and at night. Fear of hypo- and hyperglycemia have been demonstrated to be barriers to physical activity and weight-management engagement among youth with T1D (Driscoll et al., 2017; Kahkoska et al., 2018).

A better understanding of the barriers and facilitators to healthy lifestyle behavior engagement can better inform the development of recommendations and programming for youth with T1D, especially those with T1D and comorbid overweight/obesity who are at increased risk for cardiovascular disease risk and insulin resistance. The current study aimed to examine the perceptions, facilitators, and barriers of healthy lifestyle behavior engagement among adolescents with T1D and overweight/obesity, their caregivers, and pediatric endocrinologists. The goals of this study were to qualitatively understand (1) perceptions of T1D management and healthy lifestyle recommendations among different members of the diabetes care team, (2) perceived barriers to engaging in these behaviors among youth with T1D and comorbid overweight/obesity, and (3) current concerns specific to weight management among adolescents with T1D.

Methods

Participants

The participants for this study were adolescents with T1D and overweight/obesity, caregivers of adolescents with T1D and overweight/obesity, and pediatric endocrinologists. All participants were recruited from the New England area. Recruitment for adolescents and caregivers occurred by distributing flyers throughout local pediatric endocrinology offices, physician referrals, and letters mailed to potentially eligible participants identified through the electronic medical record. Pediatric endocrinologists were recruited via phone call and email requests to identified New England endocrinology practices. All recruitment occurred between January 2021 and August 2021. Adolescent inclusion criteria included: (1) between the ages of 13–17 years old, (2) diagnosed with T1D at least 6 months prior to study enrollment, and (3) BMI ≥ 85th percentile for age and sex assigned at birth. Caregivers were the legal guardians of the adolescent participants. Pediatric endocrinologist inclusion criteria included that they have a medical degree (MD, DO) and treated pediatric patients with T1D. All participants spoke English.

Procedures

Methods were approved by the authors’ institutional review board. Interested persons completed a phone screen with study staff to confirm eligibility criteria. Eligible participants met with study staff via HIPAA-compliant Zoom. Participants were encouraged to participate in a private location away from non-consented others. Participants completed electronic informed consent/assent, then each participant completed an individual 60-min semi-structured interview. Interview guides were created for each group of participants (adolescents, caregivers, endocrinologists). Questions to adolescents and caregivers focused on knowledge of national guidelines for healthy living, perception of adolescents’ personal engagement in these behaviors, interest in changing their behaviors, ways in which diabetes affects engagement in healthy living behaviors or vice versa, and concerns about weight or body shape. Endocrinologists were asked how they typically manage comorbid T1D and overweight/obesity and their management of healthy lifestyle behaviors and weight. The interviewer asked follow-up questions to clarify responses and gather additional details. One author (J.L.W.) conducted all the interviews. The interviewer did not have any prior professional relationship with any of the participants and was not part of any of the adolescents’ medical care teams. All interviews were audio-recorded.

Throughout the data collection phase of the study, two authors (J.L.W. and E.J.) met regularly to discuss initial observations from interviews and determine data saturation. When both authors agreed that no further significant new information was being collected, it was determined data saturation was met.

After each interview, participants completed self-report measures via REDCap (Harris et al., 2009). Participants also provided their consent for the following electronic medical record data to be collected if available: date of diagnosis, medications prescribed, most recent HbA1C, most recent percent time in target blood glucose range (i.e., 70–180 mg/dl) determined by continuous glucose monitor (CGM) reading, number of endocrinology appointments attended over the past 5 years, and most recently measured BMI. A more detailed description of study procedures were previously published (Warnick et al., 2023). Participants were compensated for their time with an e-gift card ($25 for caregivers and endocrinologists; $35 for adolescents).

Data analysis

Interviews were transcribed verbatim and de-identified. Applied thematic analysis was used to analyze the data (Guest et al., 2011). Following this approach, two independent coders (J.L.W. and K.E.D.) read the transcripts to familiarize themselves with the data, after which they created an initial coding structure. This coding structure was refined during coding of the first few interviews, to develop the final coding structure. All transcripts were coded independently by both coders. Coders compared codes and clarified discrepancies to come to full agreement on all codes. Due to this methodology, no interrater reliability was conducted. The study team met weekly to debrief interviews during data collection and review codes during the data analysis. Final codes were entered into NVivo software (Release 1.7), and the data were iteratively reduced and organized into themes via discussion amongst co-authors.

Results

Participants

Forty-four caregivers expressed interest in the study, and of those, 37 caregivers completed a phone screen. Seventeen families were ineligible; 13 adolescents did not meet BMI criteria, 2 adolescents were not interested in participating, 1 adolescent was non-verbal, and 1 caregiver did not speak fluent English. Twenty dyads were eligible. Of those, six never attended scheduled appointments and were lost to contact, one cancelled their appointment, and one teen and one caregiver (unrelated from two separate dyads) dropped from the study. Participants included 12 adolescents, 12 caregivers, and 9 pediatric endocrinologists (Table 1). On average, adolescent participants were 15 years old (SD = 1.2) and had been diagnosed with T1D for 5.5 years (SD = 3.3). Most adolescent participants reported using CGMs (83.3%), 75% used insulin pumps, and 25% used multiple daily injections. Seven adolescents had CGM data for the 14 days prior to data collection; of those, average time in range (70–180 mg/dl) was 57.43% (SD = 18.9). Most caregivers reported identifying as female (67%), and most endocrinologists identified as male (56%).

Table 1.

Demographic characteristics.

Characteristics	N (or mean)	% (or SD)	Range
Adolescent characteristics (n = 12)
Gender identity
Female	7	58.3%
Male	5	41.7%
Age (years)	M = 14.8	SD = 1.2	13–17
Race
White	11	91.7%
Black or African American	1	8.3%
BMI percentile for age-and-gender	M = 96.4	SD = 2.3	91–99
Overweight	2	16.7%
Obesity	10	83.3%
HbA1c	M = 7.9	SD = 0.9	6.4–9.2
Caregiver characteristics (n = 12)
Gender
Female	8	66.7%
Male	4	33.3%
Age (years)	M = 45.7	SD = 3.5	40–50
Race
White	11	91.7%
Black or African American	1	8.3%
Household income (n = 11)	Median = 100K	SD = 82.8K	24,000–300,000
Highest level of caregiver education
High school degree or GED	1	8.3%
Some college, no degree	4	33.3%
Associate’s degree	1	8.3%
Bachelor’s degree	2	16.7%
Master’s degree	4	33.3%
Provider characteristics (n = 9)
Gender identity
Female	4	44.4%
Male	5	55.6%
Age (years)	M = 44.9	SD = 9.1	34–62
Race
White	8	88.9%
Asian	1	11.1%

Identified themes

Three main themes were identified across all participants: (1) adolescent discomfort with aspects of T1D that draw attention to the self; (2) T1D as a barrier to engagement in healthy lifestyle behaviors; and (3) physiological dysregulation due to T1D impacting health behaviors. Themes, subthemes, and specific quotes highlighting the themes are described in further detail.

Theme 1: Adolescent discomfort with aspects of T1D that draw attention to the self

Participants in all groups (i.e., caregiver, physician, adolescent) expressed the challenging cognitive, emotional, and social effects of having a complex chronic illness during adolescence, especially as they identify differences between teens with T1D and those without (e.g., medical device alarms that go off and cannot be silenced, not being able to eat the same foods or eat at the same time as others). Participants explained that fear of nonconformity negatively affects adolescents’ engagement in healthy lifestyle behaviors. One teen (female, 15 years) explained this discomfort and the hesitation she feels when treating a low in school in the following quote: “…like how like bad it feels like to have diabetes and know that, like everybody's like attention is on you and you have to sit out for something. Or like … . especially right now, since we're in masks [during COVID-19 pandemic], you have to take your mask off to eat and everybody's looking at you like, what are you doing?” Another teen (male, 16) explained that they prefer to spend time online making virtual friends because it is easier to hide their diabetes, leading to increased sedentary time. A caregiver (female) shared, “when he's among his peers, he just wants to be normal. He doesn't want anybody to know [about diabetes].” Other caregivers provided examples of their teens grazing on foods at parties or restaurants without providing themselves with insulin (as medically indicated) to avoid drawing any attention to themselves as “different” from their peers. A caregiver (female) explained that “being around his [her teen’s] friends who don’t have diabetes, and don’t have to really think about what they’re doing as much…. is the challenge…. Like resisting the urge to like, have pizza right now when his blood sugars are already two hundred.” One teen (male, 13 years) took this a step further, explaining how he does not like to seek diabetes support: “I don't like doing stuff involved with diabetes because….I just want to live like a normal person without doing things just because I went to the hospital once and I got diagnosed with it.” This fear of “being different” from peers and of capturing other’s attention unintentionally due to diabetes was described as explanations for adolescents not self-managing their diabetes, not engaging in physical activity, eating a poorer quality diet, and as a catalyst for low mood.

Regarding endocrinologists’ behaviors, they also described ways their practice is affected by not wanting to further identify differences between adolescents with T1D and their peers. Endocrinologists expressed hesitation to refer patients to structured behavioral weight-management interventions and/or to focus on adolescents’ excess adiposity unless it was, in their opinion, a “serious problem.” One endocrinologist (male) explained, “Young people who already feel like they have too much going on, that they have to be different from their friends, they have to wear a sensor or a pump, or they have to take insulin. Again, doing something else on top of it to make them feel more medicalized.” Many endocrinologists stated that they try to discuss healthy eating and physical activity with all of their patients, but that the breadth of what they cover, and the time spent discussing these behaviors, are often less with patients with diabetes compared to with their patients without diabetes. An endocrinologist (female) described the tension she feels in clinic with the following: “our focus is on like prioritization, like, let's say like you need to take your insulin, like, yes, I want you to be active and let's try and get some more things that aren't carbs into your diet. But I need you to take your insulin. I need to check your blood sugar… it's not so much time to visit. It's a child who's already stressed, overwhelmed and dealing with type one diabetes, adding something else on in situations when they are at a point of stress in their life. I find near to impossible so I kind of put that aside.”

Theme 2: T1D is a barrier to engagement in healthy lifestyle behaviors

All three groups of participants described ways in which T1D symptoms and management requirements acted as barriers to engaging in either general healthy lifestyle behaviors or weight management.

Participants expressed that adolescents’ experiences of managing T1D can act as a barrier to engagement in other healthy behaviors. Overall, participants noted frustration with the tensions between management of T1D and broader healthy lifestyle behaviors, often choosing to focus more on T1D management. For example, participants expressed frustration with wanting to engage in physical activity for health reasons but needing to stop mid-activity and/or eat excess snacks to manage their blood glucose levels, which inhibited them from engaging in physical activity. Similarly, participants explained that T1D management encourages excess sedentary activity and negatively impacts sleep. One teen (female, 14 years) explained how using a phone feels safer than exercising because it is likely to affect one’s blood glucose. “[Using a phone] doesn’t take any energy at all… And having to carry around my phone with me all the time, because whenever I go, I have to have my phone with me for my CGM. It’s just there all the time.” Caregivers discussed the difficulty in using technology to set limits (i.e., teens can earn technology time after meeting behavioral goals), which is a commonly used strategy in child behavioral medicine. Caregivers explained this is because adolescents with T1D need their devices to self-manage diabetes. This is highlighted by one caregiver (female) sharing, “…we talked to the counselor [about limit setting]. And they're like, ‘you gotta just take her phone. You just have to do it.’ So there was one occasion that we've taken her phone. But the thing with the phone is that it needs to be near her because of her Dexcom.”

Along these lines, participants specifically called out difficulties with weight management. Some stated noticing a change in their body shape and/or weight since diagnosis with T1D, and many expressed interests in learning safe and healthy strategies for weight management specific to T1D. A teen (female, 14 years) described noticing a change in her body shape since her T1D diagnosis: “I used to be like a little twig. I was really skinny. And then when I went on insulin, I gained a lot of weight because that's just how the insulin affected me.” One teen (male, 13 years) said “…while I'm trying to lose weight, I gain weight because I'm taking stuff to not go low. I have to eat something and drink something which just counters from doing the thing that I wanted to do. And then I just like, I get in this loop where I'm exercising and ‘oh, I'm low, I gotta eat.’ And then I feel like I gained it all back and then I'm doing it again. It's like… it's just like a loop.” Similarly, an endocrinologist (female) explained “…well, I think just like, you know, exercise is tricky because it can drive the blood sugar low and then they need to have more carbs to kind of counteract that, which kind of negates the purpose of exercise sometimes in some ways.”

Adolescents noted that there is a lack of resources specific to persons with T1D focused on engaging in positive weight-related behaviors. One teen (female, 14 years) explained looking into a commercial weight loss program: “If a diabetic were to follow that type of program… it would be very detrimental and dangerous for us.” Another teen (male, 13 years) stated “I'm big. I don't want to be big, obviously. And I can't really help it sometimes because sometimes… like one day, I just kept going low. So I would have like juice and bar, cookies, like all these things to try to bring me up. And like at the end of the day I'm throwing up because of all the stuff I was eating and I gain a lot of weight and I just didn't know how to stop.” This was compounded by caregivers’ and endocrinologists’ concerns that addressing weight status may negatively impact adolescent mental health or add burden to their already stressed experiences of living with a chronic illness. Many endocrinologists stated that they rarely have time during appointments to discuss weight management with their T1D adolescent patients, unless excess adiposity poses a serious health risk (i.e., Class 3 obesity). They explained that they do not ask their patients with T1D as frequently as their other patients about diet, sleep, and physical activity due to needing to prioritize blood glucose trajectories and diabetes self-management behaviors. They explained that discussions about blood glucose fluctuations, taking insulin as prescribed, and A1C results take priority.

Similarly, some participants noted a lack of nutrition education specific to T1D as a barrier. An adolescent (female, 14 years) stated “I think it's different with type one diabetes, because with type two diabetes, you do have to watch what you eat, but type one diabetics don't make insulin anyway. So what's the point?” in regards to not meeting the national healthy lifestyle guidelines. A different teen (female, 14 years) explained making healthy food choices with the following: “Sometimes what I'll do is I'll substitute a snack that's either lower in carb or sometimes like a free snack that doesn't have any carbs. Like, for example, pepperoni is a good snack. I enjoy pepperoni, it has no carbs. Cheese, no carbs. Just kind of like meats in general. No carbs.” While lower in carbohydrates, this snack is not beneficial for weight management or cardiovascular health. An endocrinologist (female) described the difficulty in eating fresh produce with “I think, harder when it's things that there isn't a label to go with it… I think that that can feel very challenging and people always struggle more when it's the, 'OK, well, I made this really delicious veggie stir fry. How many carbs is that?' I think that tends to be a lot more stressful for families.” While on the other end of the spectrum, a few teens described regularly eating fruits and vegetables and/or getting the recommended amount of physical activity daily.

Theme 3: Physiological dysregulation due to T1D impacting health behaviors

Participants identified that physiological dysregulation caused by T1D negatively affected adolescents’ abilities to engage in healthy lifestyle behaviors, including eating and sleep behaviors.

Eating Dysregulation

Participants identified that T1D negatively affects hunger and satiety cues through eating in the absence of hunger, overriding feelings of satiety, and hunger during episodes of high blood sugar. Specifically, treating lows requires eating in the absence of hunger. Caregivers expressed much frustration and guilt in “force-feeding” their children when they know they are not feeling hungry. Caregiver (female) said “I hate that I have to push food on her, especially at night after she's had a long practice, and she starts to drop.” Adolescents and endocrinologists also discussed the difficulty involved with overriding feelings of satiety to treat low blood sugar. Lows caused some to binge eat as teens reported feeling like they are unable to stop eating until the low passes. One teen (female, 14 years) shared, “sometimes it can be like just, you know, the cravings I get when I'm low can sometimes be out of control.” An endocrinologist (male) also described that some patients with T1D may unconsciously seek out lows to justify eating sugary foods and beverages, “…you can get into the problem where they want to have low blood sugars because then they have permission to eat whatever they want.” Lastly, some adolescents and caregivers explained that they can feel hungrier during episodes of high blood sugar and then must either suppress their hunger or choose to act on their hunger and feel sick afterwards due to hyperglycemia.

Sleep dysregulation

Participants also noted that physiological dysregulation occurs during overnight blood sugar highs/lows or CGM/insulin pump alarms. While caregivers acknowledged improvements in sleep with updated technologies, most stated a minimum of once per week nightly awakenings even when using the most updated diabetes management technologies. Specifically, adolescents and caregivers described difficulty falling asleep and staying asleep due to T1D management. A teen (female, 15 years) stated that “…my mom is normally very good about getting up in the middle of the night. And like… giving me a correction or like having me wake up to eat a snack…. but like, when I'm low and I'm sleeping, that's like I feel awful, I get, like, really sweaty and achy and it's just like a mess. And then once I wake up and I eat so much sugar, I feel like I can't fall back to sleep.”

Discussion

This study identified significant challenges to engaging in healthy lifestyle behaviors such as physical activity, eating a high-quality diet, reducing sedentary behavior, and attaining quality sleep faced by adolescents with T1D. These are modifiable behaviors that can directly impact body size and weight, and all are also associated with other suboptimal health outcomes such as increased cardiovascular disease risk.

The urge to belong is especially robust during adolescence, for peer acceptance is critical to the development of self-esteem and self-concept (Brazeau et al., 2018; Tomova et al., 2021). In alignment, participants described the fear of being perceived as an outsider as strongly motivating their behaviors. This was predominantly described as avoiding engagement in both healthy lifestyle behaviors and T1D-specific management. This finding is consistent across the literature; adolescents with T1D abstain from treatment behavior in public and in the presence of peers (Jeong et al., 2018; Ortiz-Domenech & Cumba-Avilés, 2021), which is correlated with higher HbA1C and cardiovascular complications (Brazeau et al., 2018; Ingram et al., 2022).

Results from the study add to the current diabetes literature by highlighting how T1D management and healthy lifestyle behavior recommendations can, at times, contradict. Examples included (1) wanting to exercise but needing to stop if experience hypoglycemia; (2) trying to sleep for the recommended time but waking up in the middle of the night due to medical device alarms or fluctuating blood glucose; and (3) having continuous access to smartphones due to diabetes technology may lead to increased sedentary behaviors. These results add to the growing literature on the challenges youth with T1D face when adhering to typical weight management suggestions, such as limiting sugar-sweetened beverages, increasing exercise, and reducing calorie consumption (Driscoll et al., 2017; Kahkoska et al., 2018).

Another major barrier reported was the physiological dysregulation that occurs with T1D. Those with diabetes often need to ignore their natural hunger and satiety cues, as they need to eat to treat a low when not hungry or conversely restrain from eating during a hyperglycemic episode even when they feel hungry. Appetite, hunger, and satiety dysregulation have been documented in the obesity literature; however, there is limited knowledge on the mechanisms and prevalence among persons with T1D (Hopkins et al., 2020; Rodriguez et al., 2015). Considering the role of insulin in appetite homeostasis, dysregulation in T1D is logical (Woods et al., 2006). Future research is needed to identify the potential biological and behavioral mechanisms leading to these reported dysregulated systems.

In addition to hunger and satiety dysregulation, caregivers and teens often discussed sleep disruptions due to diabetes care. Caregivers described weekly sleep disturbances for the entire family due to T1D—even with the most updated diabetes technologies. Prior research has revealed that approximately 67% of adolescents with T1D experience decreased sleep duration and quality, which are both positively correlated with HbA1C, hypoglycemia, and diabetic ketoacidosis (Jaser et al., 2017; Perez et al., 2018). While safe blood sugar stability is imperative, sleep hygiene education and/or intervention may be beneficial to this population who is known to experience significant sleep disturbance because of diabetes management.

This study used qualitative methodology that allowed for a highly descriptive and nuanced explanation of the barriers to healthy lifestyle engagement among adolescents with T1D and overweight/obesity. While national organizations recommend behavioral lifestyle intervention to prevent cardiovascular complications with comorbid obesity and T1D, this study is one of the first to examine the barriers of these recommendations directly from patients’, their caregivers’, and their endocrinologists’ perspectives. Though the sample size is equivalent to other qualitative studies (Driscoll et al., 2017; Kahkoska et al., 2018), it is small and homogeneous (e.g., participants were primarily White and middle income), thus limiting the ability for the results to generalize across all populations. The study is further limited in that there was no sampling methodology used specific to increasing generalizability. Future research with a larger and more diverse sample is necessary to better understand all potential barriers among youth T1D. Socioeconomic status, race, ethnicity, and education level are associated with differences in T1D technology usage (e.g., CGMs, insulin pumps) and frequency of endocrinology visits (Walker et al., 2021). One might expect that endocrinologists would have even less opportunities to discuss healthy lifestyle behaviors with patients they see less often, and that those with reduced access to technology might have unique perspectives regarding barriers to healthy lifestyle behaviors. Further, study procedures were conducted virtually during the COVID-19 pandemic. While study staff encouraged participants to speak in a private location and use headphones to reduce others in their environment from overhearing the conversations, it is possible that some were less open for fear of being overheard, especially as caregivers and adolescents who lived in the same households were interviewed consecutively. It is also possible that results were influenced by the pandemic, as youth had less opportunities to engage in physical activities (e.g., no organized sport activities, home-schooling) and may have been exposed to a greater obesogenic environment (e.g., snack food availability at home, lack of activity opportunities, increased stress). Finally, the study’s methodology did not use member checking or triangulation of the data, which could be used in future research to strengthen the trustworthiness of the data analysis.

Results suggest that specific recommendations on how to manage healthy living, weight management, and T1D disease management concurrently are critically needed for adolescents. Weight stigma and excess burden are valid concerns for providers and caregivers, particularly as weight stigma is associated with many negative physical and mental health outcomes (Puhl & Lessard, 2020; Warnick et al., 2022). Yet, youth in this study expressed interest in receiving professional recommendations. Care should be taken to have these conversations in a safe and effective manner. One recommendation is to first ask the patient whether they feel comfortable discussing weight and if there are specific words they prefer regarding weight and shape (Dutton et al., 2010). Once consent to discuss weight has been established, use developmentally appropriate language to discuss the association between excess adiposity and health outcomes (Warnick et al., 2022). Youth may attempt unhealthy methods to change their weight or shape in the absence of reliable information and support (Cherubini et al., 2018; De Paoli & Rogers, 2018). Results regarding providers’ perspectives of disordered eating specific to youth with T1D and comorbid obesity from this study have been previously published (Warnick et al., 2023). They may also be more likely to experience diabetes-related distress and burnout if they are consistently feeling frustrated by trying to adhere to the healthy lifestyle and diabetes management recommendations provided to them, while at the same time, experiencing that the two recommendations contradict one another. It may be helpful to validate their frustration and normalize that weight management is particularly challenging for persons with T1D.

Results from the current study will be used to design a healthy lifestyle behavior program specific to adolescents with T1D to address the identified challenges. Only one published study has explored weight-management techniques specific to youth with T1D; while successful, the study sample with small and not randomized (Thomas-Dobersen et al., 1993). The authors of the current study will use the results from this study in combination with published literature and standard weight-management protocols to create a behavioral healthy lifestyle intervention specific to youth with T1D and higher weight status. The intervention will include education on eating a balanced diet, increasing physical activity while reducing fear of hypoglycemia, and support regarding diabetes distress.

Author Contributions

Jennifer L. Warnick (Conceptualization [equal], Data curation [equal], Formal analysis [equal], Funding acquisition [equal], Methodology [equal], Writing—original draft [equal]), Katherine E. Darling (Formal analysis [equal], Methodology [equal], Writing—review & editing [equal]), Lisa Swartz Topor (Conceptualization [equal], Data curation [equal], Methodology [equal], Resources [equal], Supervision [equal], Writing—review & editing [equal]), and Elissa Jelalian (Conceptualization [equal], Investigation [equal], Methodology [equal], Resources [equal], Supervision [equal], Writing—review & editing [equal])

Funding

The study was supported by a NRSA postdoctoral fellowship from the National Heart, Lung, and Blood Institute (T32 HL076134). J.L.W.’s effort was also supported by a career development grant from the National Institute of Diabetes and Digestive and Kidney Diseases (K23 DK132457). K.E.D. was supported by a NRSA postdoctoral fellowship from the Agency for Healthcare Research and Quality (F32HS02707) and a career development grant from the National Institute of Diabetes and Digestive and Kidney Diseases (K23DK135791).

Conflicts of interest: The authors have no conflicts of interest to disclose.

Data availability

The corresponding author can provide de-identified summaries of qualitative interviews upon request.