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Journal of Pediatric Psychology logoLink to Journal of Pediatric Psychology
. 2022 Jun 30;47(10):1145–1155. doi: 10.1093/jpepsy/jsac055

Diabetes-Related Worries and Coping Among Youth and Young Adults With Type 1 Diabetes

Lindsay Taraban 1,1, Rachel Wasserman 2, Viena T Cao 3, Sahar S Eshtehardi 4, Barbara J Anderson 5, Debbe Thompson 6, David G Marrero 7, Marisa E Hilliard 8,✉
PMCID: PMC9582784  PMID: 35773974

Abstract

Objective

Although mood and anxiety symptoms are common in youth with type 1 diabetes (T1D), little research has described their worries across developmental stages or the strategies they use to cope with these worries. This secondary data analysis aimed to describe and characterize common T1D-related worries and coping strategies from middle childhood through young adulthood.

Methods

Twenty-three youth (9 children, 7 adolescents, and 7 young adults) completed semistructured qualitative interviews about health-related quality of life. We coded interview transcripts using thematic analysis to generate common themes of diabetes-related worries and coping strategies.

Results

Participants’ worries fell into four major themes: Managing Blood Glucose, Self-Efficacy for Diabetes Management, Interpersonal Relationships, and Lifestyle Impact, and eight youth denied having diabetes-related worries. Coping strategies fell into the three major themes: Attempts to Change Source of Worry, Attempts to Change Reactions to Worry, and Attempts to Orient Away from the Worry.

Conclusions

Youths’ worries about various aspects of living with and feeling able to self-manage diabetes are important to consider across pediatric development as they can impact youths’ participation in daily activities and future plans. By adolescence, youth report longer-term worries about the health and lifestyle implications of diabetes. Youths’ reported coping strategies are generally consistent with existing coping frameworks, though our data suggest some possible refinements. Social support emerged as an important coping strategy for all age groups. Thus, interventions supporting youth in building and strengthening their social networks may be particularly beneficial in helping youth cope with their diabetes-related worries across development.

Keywords: coping, pediatrics, qualitative research, type 1 diabetes, worries

Introduction

Type 1 diabetes (T1D) is among the most common chronic health conditions experienced by youth in the United States (Tönnies et al., 2019). Youth with a chronic illness, including T1D, experience greater worry than youth with an acute medical issues or without chronic conditions (Van Duinkerken et al., 2020). Although worry is a normative and often adaptive emotion, it can cause functional impairment when it becomes severe (Majidi et al., 2015; Vasey et al., 1994). Up to 20% of children and adolescents with T1D experience subthreshold anxiety symptoms or an anxiety disorder (Northam et al., 2005), which is higher than in the general population (5–15%; Polanczyk et al., 2015). In the few prior qualitative studies that have addressed worry in the context of T1D, adolescents and young adults reported worries about passing out or not waking up due to low blood sugar (hypoglycemia), developing diabetes-related health complications acutely or in the future, how others perceived them, and (among young adult females) the possibility of diabetes-related pregnancy complications (Balfe et al., 2013; Beveridge et al., 2006; Ersig et al., 2016; Overgaard et al., 2020). No qualitative studies have explored T1D-related worries prior to the adolescent period, and only one study has done so during young adulthood (i.e., Balfe et al., 2013).

Youth with T1D and other chronic illnesses engage in a variety of strategies to cope with their disease-specific worries. Compas et al. (2001, p.89) define coping as “conscious and volitional efforts to regulate emotion, cognition, behavior, physiology, and the environment in response to stressful events or circumstances.” They outline three types of coping strategies: primary strategies, intended to directly address the stressor or how one reacts to it (e.g., problem solving, emotional expression); secondary strategies, intended to adapt to the stressor (e.g., cognitive reappraisal, positive thinking, distraction); and disengagement strategies, intended to orient away from the stressor or one’s reactions to it (e.g., denial, avoidance; Compas et al., 2012; Jaser et al., 2017). Among adolescents with T1D, use of primary coping has been associated with better self- and parent-reported social competence, quality of life, and lower HbA1c, whereas disengagement coping has been associated with lower self-reported social competence and higher HbA1c (Jaser & White, 2011). Overall, use of primary and secondary coping strategies has tended to predict more adaptive psychological and disease-specific outcomes, whereas use of disengagement strategies has tended to predict poorer well-being and health (Compas et al., 2012; Jaser et al., 2017).

Primarily quantitative research on developmental trends in worry indicates that as children progress from middle childhood through adolescence, their worries become increasingly varied, complex, and abstract (Cartwright-Hatton, 2006). Simple, cognitive-based coping strategies emerge in middle childhood, as does support-seeking outside the home (e.g., from peers, teachers; Zimmer-Gembeck & Skinner, 2011). During adolescence and into young adulthood, coping strategies become more complex and self-reliant, including planful problem-solving and greater use of emotion-focused strategies (e.g., venting; Zimmer-Gembeck & Skinner, 2011). Understanding these patterns of worries and coping among youth with T1D, starting with participants’ own words about their experiences, can guide research about these constructs (e.g., improving self-report measures) and inform new intervention strategies.

This study is a secondary data analysis that aimed to explore T1D-specific worries and coping and how they may be consistent or shift over the pediatric years, from middle childhood through adolescence to young adulthood. Although qualitative research does not typically aim to test a priori hypotheses (Wu et al., 2016), we anticipated observing themes reflecting worries about developmentally specific experiences of living with T1D and reflecting primary, secondary, and disengagement coping strategies, consistent with the Compas et al (2012) theoretical model of coping. Based on the developmental psychology literature, we expected to observe more complex, abstract worries, and coping strategies among older youth.

Methods

Participants and Procedure

Participants included in this secondary data analysis were recruited for a qualitative study exploring health-related quality of life among n = 81 individuals (youth age ≥8 and adults of all ages) with T1D and their parents or partners (Hilliard et al., 2020, 2021). Recruitment took place using letters and posted flyers at diabetes clinics associated with two academic medical centers in the Southwestern (pediatric site) and Midwestern (adult site) regions of the United States. Among children and adolescents (ages 8–17), 41 letters were mailed; 19 consented, and 16 provided data. Recruitment statistics were not tracked at the adult site. Eligibility criteria included being diagnosed with T1D for ≥1 year, having no major comorbidities, and English fluency. The study protocol was approved by the institutional review boards of the participating institutions. Participants received a financial incentive for their time.

This secondary data analysis used transcribed interviews from the 9 children (age range 9–12 years; mean = 11.1, SD = 3.68), 7 adolescents (age range 13–17; mean = 15.3, SD = 1.45), and 7 young adults (age range 22–25; mean = 24.0, SD = 0.93) with T1D in the larger study. Although the young adult age-band eligibility spanned ages 18–25, no young adults between ages 18–21 enrolled. Participant demographic data for the children and adolescents were drawn from demographic questionnaires parents completed at the time of the interview; young adults provided these data via self-report. Study staff extracted medical data and HbA1c values closest to the time of study participation from the medical record; most were within 2 months of the interview date, and all within 6 months. Data on diabetes duration were not available for the young adult participants (n = 7), although all had diabetes duration >1 year. Table I summarizes participant clinical and demographic characteristics.

Table I.

Participant Demographic and Diabetes Characteristics

Demographic characteristics n (%) Range Mean (SD)
Age, years 9–25 16.3 (5.6)
Gender, female 10 (43)
Race/ethnicity
 Non-Hispanic White 11 (48)
 Non-Hispanic Black 6 (26)
 Hispanic 6 (26)
Health insurance
 Public insurance 8 (35)
 Private insurance 13 (57)
 Both public and private insurance 1 (4)
Diabetes characteristics
 Insulin pump 10 (43)
 Continuous glucose monitora 3 (13)
 Duration of diabetes, yearsb 1.07–11.99 4.61 (3.24)
 HbA1c (%) 5.8–12.5 8.4 (1.73)
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Note. HbA1c = glycosylated hemoglobin A1c.

a

n = 1 did not respond.

b

Data not available for young adult participants (n = 7).

Measure: Qualitative Interview

Participants completed semistructured interviews about diabetes health-related quality of life, which were developed by behavioral scientists with expertise in diabetes and qualitative research methods. Among multiple topics related to quality of life (e.g., family activities, daily management of T1D, physical activity, social relationships), participants were asked about their diabetes-related worries (e.g., “Everyone worries about different things. Do you ever worry about your diabetes?”) and what they did to cope with these worries (e.g., “What do you do to feel better when you worry about your diabetes?”). Because participants may have discussed worries and coping in response to other questions, as well, we examined responses to all interview questions and did not limit this analysis to responses to these targeted questions. Interviewers were trained in qualitative interviewing strategies, including using planned prompts (e.g., “What are some of your worries about diabetes?”) and discretionary probes (e.g., “Tell me more about that”; Braun & Clarke, 2013). However, if participants gave a clear “no” response to the closed-ended question about whether they had any worries related to diabetes, the interviewer did not prompt them further. Parents and youth were interviewed separately, except if they requested to be interviewed together. Interviews lasted up to 45 min. Interviews were audio-recorded and later transcribed verbatim by professional medical transcriptionists, with all personal identifiers removed.

Data Analysis

This secondary qualitative data analysis followed the principles of thematic analysis and Braun and Clarke’s (2013) seven-stage model, which includes (a) transcription, (b) familiarization, (c) coding, (d) searching for themes, (e) reviewing themes, (f) defining themes, and (g) finalizing analyses for write up. The multidisciplinary research team included three pediatric psychologists, one social scientist, one qualitative methodologist, and three graduate-level trainees in psychology, all experienced in behavioral and medical management issues related to T1D. Following Stage 1 (transcription), the first author (pediatric psychology intern) generated ideas for potential codes based on the theoretical and empirical literature on worries and coping in pediatric populations (e.g., codes related to primary, secondary, and disengagement coping strategies; Compas et al., 2001). In Stage 2, the first and last author (diabetes pediatric psychologist) read three to four transcripts and noted salient concepts related to diabetes-related worries and coping, then created and defined an initial set of codes based on these concepts. For Stage 3, the first author read the remaining transcripts, applied the initial set of codes, and noted new concepts that did not fit within existing codes. The first and last author defined the new concepts and added them to the codebook. The first author re-read the transcripts, sought input from other authors, and went through several rounds of refinement (e.g., combining codes for parsimony; adding new codes; specifying definitions; reapplying codes) until the codebook was finalized and all relevant codes were applied to each transcript. An independent rater (psychology graduate student) who had not been involved in the development of the codebook double-coded a random subset of transcripts (26%; two transcripts from each age band) to identify any differences in coding. This resulted in three discrepancies in coding, which were resolved through discussion, reviewing the context of the excerpt, and consultation with the last author. Stages 4–6 took place among full research team, who together analyzed the coded excerpts to generate meaningful overarching themes related to worry and coping. This process balanced inductive and deductive reasoning, as themes were constructed based on the codes generated from the observed data, while also accounting for research literature, developmental considerations, and team members’ expertise and clinical experience. To finalize the themes for reporting (Stage 7), the first and last author selected interview excerpts that exemplified the themes and subthemes and organized the results into text and graphic format (Figure 1).

Figure 1.

Figure 1.

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(A) Worry-related themes and subthemes. (B) Coping-related themes and subthemes.Note. C = described by child participants; A = described by adolescent participants; YA = described by young adult participants.

Results

Diabetes-Related Worries

We generated four themes for diabetes-related worries, which we labeled: “Managing Blood Glucose,” “Self-Efficacy for Diabetes Management,” “Interpersonal Relationships,” and “Lifestyle Impact” (Figure 1A). These themes and their subthemes, along with illustrative interview excerpts, are described below.

Managing Blood Glucose

Children, adolescents, and young adults shared worries specifically about managing their blood glucose, including worries about the consequences of glycemic extremes. These worries fell into three subthemes, which we labeled “Experiencing Acute Health Events,” “Long-Term Health Problems,” and “Dying from Diabetes.”

Experiencing Acute Health Events

Child, adolescent, and young adult participants reported wide-ranging worries about short-term, adverse health events related to blood glucose, including fears about possible acute consequences of hyperglycemia (high blood glucose). Participant A (female, age 15) said: “I’m scared of high blood sugars really, I just really hate them, plus they make me feel bad, like I’m sleepy all the time and my mouth gets like dry and stuff like that.” Participants of all ages also worried about short-term consequences of hypoglycemia (low blood glucose), such as Participant C (female, age 11), who shared: “I don’t want to pass out or anything. Because one time I didn’t pass out but my face was all white so we had to leave early and go to the hospital … I was just afraid and my eyes got blurry.” Child and young adult participants reported specific worries about hypoglycemia occurring overnight. As stated by Participant D (male, age 23): “Everyone’s type 1 fear is the midnight low that you don’t really wake up from…what happens if I go low in the middle of the night and have a seizure or something?”

Long-Term Health Problems

Adolescent and young adult participants (no children) reported worrying about future health complications from diabetes. Some worried about general health complications, such as Participant E (female, age 15), who said: “I worry so much if like, those high blood sugars will affect me when I’m grown, like I’ve heard so many stories, even my dad has told me sometimes [high blood sugar] hurts your inside … ” Participant F (female, age 23) reported: “I can imagine the sugar tearing my arteries apart, like it tearing up my organs. . . .” Some shared worries about specific serious health complications, such as losing their vision, going on dialysis, or limb amputation. As Participant G (male, age 13) shared: “I’m worried about dialysis and stuff like that. Not taking care of it, losing body parts, limbs and stuff. I really don’t want that, having problems whenever I get older.”

Dying From Diabetes

Adolescent and young adult participants (no children) expressed fears that they would die from diabetes. Participant E (female, age 15) reported hearing many stories about negative health consequences of diabetes, concluding: “you might be fine from the outside but in the inside it could possibly kill you. So that’s what worries me.” Similarly, Participant F (female, age 23) shared: “I went to pre-med and it was like study after study: these are the bad effects of diabetes, here’s why you shouldn’t have diabetes. I was just like, ‘I’m gonna die. Like I’m just gonna die.’”

Self-Efficacy for Diabetes Management

Child and adolescent participants and one young adult participant spoke about worries related to their ability to engage in diabetes-related self-management tasks. Children reported worrying about being able to inject their own insulin, in terms of being “…scared I might hit something” (Participant B, male, age 12) or feeling “…a little worried sometimes because right now I’m not as good in shooting at different places” (Participant I; female, age 10). Adolescents worried about being unprepared to manage a hypoglycemic event, such as Participant H (male, age 17): “Usually I worry about, like, what if I’m low and I don’t have anything around. Like what am I gonna do, so. I don’t always carry something with me, even though I should, I don’t always do it. So sometimes I’m like, what’s gonna happen?” One young adult, Participant J (male, age 25), described worries about self-efficacy in a hypothetical future hypoglycemic event: “Generally, I worry about getting low and getting to a point where I couldn’t take care of myself, which, thank God hasn’t happened.”

Interpersonal Relationships

Child, adolescent, and young adult participants expressed worries about the effects of diabetes on their social interactions, a subtheme we labeled “Social Judgment.” Some young adult participants who were parents described worries about their ability to care for their children, a subtheme we labeled “Hypoglycemia while Parenting.”

Social Judgment

Child, adolescent, and young adult participants shared worries about negative reactions from peers due to having T1D. Participant E (female, age 15) reported being uncomfortable with the attention of her peers, stating: “And then there’s been times where I get like so nervous because everybody is just getting around you and starts asking you questions like, ‘why do you do this?’” Participant K (male, age 12) shared that he avoided telling his classmates that he had diabetes because he had “trust issues” with them, and worried “what they’ll think of me … like someone else different from everyone else.” One young adult, Participant L (female, age 25), described having worried about negative reactions from potential romantic partners: “It’s been a while since I’ve dated anyone but there was always a little bit of fear that if I told them I had diabetes it was weird and they wouldn’t want to deal with that.”

Hypoglycemia While Parenting

Two young adult participants who were parents reported worrying about endangering their children by having a hypoglycemic episode while parenting. Participant D (male, age 23) said he was worried about: “having a crucial low if it’s just me and my daughter … I never want to be in a situation where it’s like I poop out and she’s just by herself.” Similarly, Participant F (female, age 23) shared: “I could go low and I could drop the baby or leave him unattended and that would be bad.”

Lifestyle Impact

Child, adolescent, and young adult participants reported diabetes-related worries impacting their day-to-day life and future plans. We generated two subthemes, which we labeled “Current Interference” and “Future Planning.”

Current Interference

Child, adolescent, and young adult participants shared diabetes-related worries that impacted their participation in enjoyable activities. For example, Participant M (female, age 11) worried about her safety at a sleepover: “if I’m like high or low in the middle of the night . . . . ” Young adults reported worries related to traveling, such as: “Anytime we go anywhere, I’m like ‘where’s the nearest hospital? Let’s go see it just to make sure’ … ‘I need to know where it is, just in case’” (Participant F; female, age 23). Some avoided trips altogether, such as Participant J (male, age 25) who said: “there’s been one or two cases where I didn’t do a trip because it was going to be too long or too out in the middle of nowhere that I was worried that if something would happen or I wouldn’t be able to carry around supplies . . . . ” Children and adolescents also reported worries about diabetes affecting their engagement in physical activity, such as Participant H (male, age 17), who said: “I like to do some physical activity but I’m not, but like with, if my sugar goes low. I’m just always worried about it. What would I do?”

Future Planning

Adolescent and young adult participants (no children) reported worries about diabetes that affected longer-term planning, such as their career plans, financial plans, and their plans to start a family. Participant G (male, age 13) said: “I wanted to be in the Air Force, but my diabetes is kind of making me scared to do it. So I don’t really think I want to do that now, because something could happen at any time. Like I could … be somewhere and run out of insulin and not have the stuff I need.” Some young adults shared worries about possible future expenses related to diabetes, such as: “We can’t save right now, but we need to save. I think about it every day . . . . I don’t know if I’m gonna be in a coma for a year in a hospital that costs money, like over $100,000 … Just worry, worry, worry.” (Participant F, female, age 23). Young adults also discussed how worries about diabetes had changed their thinking about starting a family. These included worries about pregnancy, as in the case of Participant L (female, age 25): “I worry about starting a family one day … and just the whole pregnancy and dealing with diabetes and checking your blood sugar all the time and it just being so crazy and not to mention you have another life that’s depending on you.” and also whether or not to have children, as shared by Participant D (male, age 23): “I really wanted a family. I no longer want a family…I would never want to risk bringing a beautiful child into the world and then having them live with this…I’m too afraid of somebody having to live through what I’ve lived through.”

Denies Worries

When asked about worries about diabetes, five children and three adolescents (no young adults) said they have none. Most simply responded “no” or “not really,” though Participant N (female, age 11) added: “I know that my mom and me and my dad, we have it under control and there’s nothing really to worry about.”

Coping With Diabetes-Related Worries

We generated three themes related to strategies participants used to manage their diabetes-related worries, which we labeled: “Attempts to Change the Source of Worry,” “Attempts to Change Reactions to Worry,” and “Attempts to Orient Away from Worry” (Figure 1B). These themes, their subthemes, and interview excerpts are below.

Attempts to Change Source of Worry

Child, adolescent, and young adult participants reported coping with diabetes-related worries by using problem-solving strategies to directly respond to the source of the worry. We generated two subthemes: “Reactive Problem Solving” and “Proactive Problem Solving.”

Reactive Problem Solving

Child, adolescent, and young adult participants reported taking immediate action to address their diabetes-related worries, such as by using diabetes self-management skills to respond to out-of-range blood glucose levels. For example, Participant K (male, age 12) said: “I’ll usually check myself to see, like if I need to eat something or if I need to get insulin” as a method to manage worries about blood glucose levels. Similarly, Participant H (male, age 17) reported that when he worries about hypoglycemia, he seeks help from others: “I try to solve the problem. So if I’m low and there’s nothing around, then I tell someone, I’m like, hey, we need to go get something, like right now.”

Proactive Problem Solving

Adolescent and young adult participants (no children) also reported using preventive action to address worries. For example, in relation to his worries about possible future long-term health complications from diabetes, Participant J (male, age 25) said: “And so I think that’s a big part of why I try to stay active, because I know when I get older it’s going to be harder [to independently manage my diabetes].” Participants also used support from close others to respond to worries about the future preventively. For example, Participant F (female, age 23) described staying in contact with close family members to manage her worries about having a hypoglycemic episode while alone with her infant son. She explained that she “maintain[ed] contact with more people,” including texting/calling throughout the day, for example: “Hey, I’m running low right now just to let you know. Call me back in an hour. Make sure I get up.” Some participants used creative approaches to manage their worries, such as having a tattoo that indicated type 1 status, which was used to initiate conversations with new acquaintances about what should be done in the context of a hypoglycemic event.

Attempts to Change One’s Reactions to Worry

Child, adolescent, and young adult participants responded to diabetes-related worries through attempts to change their thoughts and feelings, rather than changing the situation or source of the worries. Within this theme, we generated two subthemes, which we defined as “Positive Cognitive Framing” and “Social Support.”

Positive Cognitive Framing

Child, adolescent, and young adult participants used strategies to re-frame anxious thoughts about diabetes, such as thinking about what they were grateful for. For example, Participant M (female, age 11), who worried about low blood glucose overnight, said: “I just think I’m glad I have the [continuous glucose monitor] because it helps so much, so I remember I have that.” Participant D (male, age 23) focused on gratitude for his roommate in response to worries about having a seizure: “That’s when reality sinks in, like thank God I have someone here…Thank God there’s someone there who can help me out.” Other participants focused on their sense of self-efficacy to handle what was within their control. For example, Participant E (female, age 15) shared: “I know if I’m doing something wrong, I know that I have to fix it…I just think about it and yes, it gives me worry but I know, okay, but I’m doing this so I’ll be fine.” Participants also used self-reassurance and focused on the present. For example, Participant O (female, age 23) said: “Right now I’m in good control, I’m in good health.” Similarly, Participant P (male, age 22) shared: “I used to be like oh, this is just going to be the death of me…but now it’s like, I’ve got it. I’m gonna live and do whatever I can while I’ve got it…at least I’ve lived a good life.”

Social Support

Child, adolescent, and young adult participants sought emotional support from friends and family members to cope with diabetes-related worries. Although aspects of social support were also observed as part of other coping themes (e.g., problem solving, cognitive framing), this subtheme highlights when participants described seeking support as a standalone strategy. Participant J (male, age 25) reported expressing his feelings to loved ones when he experienced worry: “I mean if I had a bad day or a bad week I’ll call my parents or my brother and just talk…It’s more like me venting as opposed to doing a specific action.” Some participants reported joking with family and friends to cope with their worries. For example, Participant F (female, age 23) shared: “Sometimes I make jokes about it. I’m one of those people that makes jokes when I’m uncomfortable or when I don’t want to have to worry about something.” Participants also reported specific ways that the support of close others reduced their worries about diabetes-related health problems. For example, Participant M (female, age 11), who worried about blood glucose levels while spending the night at a friend’s house, reported being reassured “since I have the [continuous glucose monitor’s remote monitoring function and] my mom can see my blood sugars.”

Attempts to Orient Away From Worry

Some child, adolescent, and young adult participants responded to worries by attempting to minimize their attention to the worry. We generated two subthemes: “Distraction” and “Avoidance.”

Distraction

Adolescent participants (no children or young adults) reported actively redirecting their attention from worries. For example, Participant Q (male, age 14) responded that his strategy for feeling better when worrying about diabetes was to “watch football.” Participant G (male, age 13) said that when he worried about long-term health complications from diabetes, “I usually do something to get my mind off it.”

Avoidance

One child and two young adults reported responding to diabetes-related worries by purposefully attempting to not think about the source of the worry (i.e., diabetes) and not allowing it to influence their decisions. Participant B (male, age 12) reported that his strategy for feeling better when he worried about diabetes was “just don’t think about it, act like you don’t have it.” Participant J (male, age 25) described using avoidance by not modifying his behaviors: “I’m not going to not do something because I’m worried about how it’s going to affect me years down the road.”

Discussion

Results of this study provide a developmental lens that extends prior research by demonstrating that worries about blood glucose are common across the pediatric spectrum, before and after adolescence. Some aspects of diabetes-related worries may be more common at younger ages (e.g., worries about symptoms associated with hyper- and hypoglycemic events; worries about their ability to complete self-management tasks) and others may emerge during adolescence or young adulthood (e.g., worries about long-term impacts on health and life decisions). Additionally, results support and extend existing frameworks in relation to understanding how youth cope with T1D-related worries. Specifically, coping strategies that rely on social support appear to be common across pediatric development, and strategies that have not been emphasized in other frameworks may be useful in this population (e.g., the utility of distraction, humor). Understanding the worries and coping strategies of youth and young adults with T1D can support clinicians in providing effective, developmentally appropriate support to this large and rapidly growing population.

Consistent with the few qualitative studies that have explored worries among adolescents with T1D (Castensøe‐Seidenfaden et al., 2017; Overgaard et al., 2020), participants of all ages in our sample reported frequent and wide-ranging worries related to management of blood glucose. Much of the research—both qualitative and quantitative—that has reported blood glucose worries among adolescents and adults with T1D has tended to focus on fears directly related to blood glucose management, specifically, hyper- and hypoglycemic events (Liu et al., 2020; Vloemans et al., 2017). These fears were also common in our sample (e.g., passing out, overnight hypoglycemia, seizures, limb amputation, death), and our results make the added contribution of demonstrating that worries about blood glucose go beyond those immediate risks. For example, the blood glucose-related worries the youth and young adults experienced affected their decisions about where to vacation, what kind of physical activity to engage in, and how they spent time with friends, as well as major life choices such as what career to pursue or whether to become parents. Also related to blood glucose management, child and adolescent participants reported self-efficacy worries about being able to conduct core diabetes care tasks independently and effectively. Prior qualitative research identified that self-efficacy worries are common during the transition to more independent self-management during adolescence (Ersig et al., 2016). Thus, self-efficacy worries may occur in stages, with worries evident first in childhood, when first learning how to carry out diabetes-related tasks, and again in adolescence, when beginning to take the lead with diabetes management. Additionally, many of the worries expressed by participants were interconnected, although we were not able to determine whether these links were systematic (e.g., worries about long-term health related to worries about death).

From a developmental perspective, children tended to describe short-term worries, while adolescents and young adults were more likely to report worries about the future, including the longer-term impact of diabetes on their health and lifestyle. This mirrors general developmental psychology literature, which has demonstrated that the worries of children tend to be more physical and concrete, whereas the worries of adolescents (and adults) are more psychological and abstract (Cartwright-Hatton, 2006), and extends this pattern to youth with T1D. To understand the responses from children who denied having any diabetes-related worries, it is important to consider family diabetes management contexts in childhood. Parents typically manage diabetes tasks in childhood, with shifts to increasing self-management in adolescence (Iannotti et al., 2006), and it is possible that children whose parents oversee management may be less aware of diabetes-related risks and thus less worried about diabetes. Alternatively, children may have been less able or willing to express their worries in the interview setting. Finally, it is important to note that worry among youth with T1D is common, and at times adaptive, experience (Majidi et al., 2015). However, if worry causes high levels of mental distress or leads to functional impairment, it warrants further assessment and treatment. As we do not have data on mental health diagnoses in this sample, we cannot speculate about whether worries expressed by participants in our sample fell within normal or clinical ranges.

In terms of coping with worry, the themes generated in this study—“Change Source of Worry,” “Change Reactions to Worry,” and “Orient Away from Worry”—map onto the existing coping framework of primary control strategies (efforts to directly change the source of stress), secondary control strategies (efforts to adapt to stress), and disengagement strategies (behavioral and cognitive avoidance), respectively (Compas et al., 2012). Our results also suggest potential refinements to existing frameworks of children’s coping as they apply to youth with T1D, such as greater emphasis on the importance of social support (and related social interactions, such as joking about diabetes with friends or family) across a range of coping strategies. In contrast to current frameworks that consider social support a subtype of secondary control coping (i.e., emotional expression), we observed that youth with T1D used social support extensively across all types of active coping (i.e., reactive and proactive problem solving, positive cognitive framing). Qualitative and quantitative research has found that social support can act as a buffer for youth and adults with T1D against diabetes-related stressors (Beverly et al., 2021; La Greca et al., 2002). One mechanism for this buffering effect may be that youth lean on close others to alleviate their disease-specific worries, from letting friends know how to help during a hypoglycemic event to using reminders of supportive friends and family to cope with worries about blood glucose management. Social support may have a different meaning for youth with T1D, as at times this support may be necessary for sustaining life, for example, in the event of a seizure or severe low blood glucose. Although prior research has documented the importance of social support for adolescents with T1D (Wysocki & Greco, 2006), in this study, coping strategies that involved support from friends and family were common across all age groups, suggesting that social support remains important throughout childhood and into young adulthood. Indeed, our previous qualitative research with young adults with T1D also recognized social support as a key component of resilience (Skedgell et al., 2021) and highlighted the importance of diabetes disclosure to peers (Pihlaskari et al., 2020).

Primary and secondary coping strategies are typically considered more adaptive than disengagement strategies (e.g., Jaser et al., 2017). However, rather than judging a given coping strategy as uniformly effective or ineffective, it is worthwhile to consider the goal of the coping response in the context of the stressor (Compas et al., 2012). One such context is the controllability (or perceived controllability) of the stressor (Park et al., 2001). For example, in the context of an uncontrollable stressor (e.g., worry about acute pain of a necessary blood draw or diabetes device insertion) distraction can be an effective and adaptive coping strategy. On the other hand, active coping strategies such as problem-solving may be more useful for controllable stressors (e.g., worry about how to effectively manage blood glucose while at school). Considering the context-specific adaptiveness of coping rather than labeling a given coping strategy as “good” or “bad” is also consistent with the tenets of third wave Cognitive-Behavioral Therapy approaches, such as Acceptance and Commitment Therapy (e.g., mindful acceptance; thought-emotion diffusion; Ciarrochi & Bailey, 2008). Additionally, while prior literature categorized distraction as a type of secondary control coping (Compas et al., 2012), we categorized it within the “orient away” (i.e., disengagement) subtheme, as our participants tended to use distraction to avoid addressing their worries.

Our qualitative analysis followed rigorous methods and adhered to published guidelines (Braun & Clarke, 2012); however, there are limitations that should be noted. The goal of qualitative research is to describe and characterize, rather than to test a specific hypothesis, and we cannot make causal claims among our constructs of interest (Wu et al., 2016). The demographic heterogeneity of our sample (i.e., race, ethnicity, family education, income, and youth age) is a strength, but given that it was a sample of convenience, particular groups may be underrepresented, limiting the transferability of the data. For example, our results may not capture worries and coping experiences that could be unique to young adults aged 18–21 years. In addition, because of our interest in understanding experiences related to worries and coping across the pediatric spectrum, and because so little prior work has examined this topic, our analyses combined a broad range of developmental stages. The sample and data available for this secondary analysis limited our ability to “zoom in” on any particular developmental stage or to explore more deeply subthemes that were expressed by only a small number of participants (e.g., crucial low while parenting; distraction), but appeared to have high clinical relevance. However, the breadth of ages and themes explored in these analyses is consistent with the hypothesis-generating nature of qualitative research. Our sample size also prohibited us from analyzing possible differences in worries and coping strategies among the varied racial and ethnic groups in our sample. Future research is necessary to explore whether groups of youth with T1D with different cultures, interactions with the healthcare system, and experiences of being marginalized may experience unique diabetes-related worries or cope in distinct ways. In addition, because neither worries nor coping were a major focus of the primary study, participants were asked only one direct question about each of these topics, and the question related to worries was closed-ended (i.e., “do you ever worry about your diabetes?”). Although the interviewers used open-ended prompts and probes to encourage more comments on these topics, and although we analyzed any mention of diabetes-related worries and associated coping strategies in the interview transcripts, using more in-depth queries on these topics would likely have resulted in more nuanced data. However, exploring secondary data is an appropriate use of thematic qualitative analysis (Braun & Clarke, 2012), and the large number of codes and interview excerpts on these topics highlights how important these issues are for youth and young adults with T1D. As is the goal of qualitative research (Wu et al., 2016), our findings did generate ideas for future research on these topics. Specifically, our understanding of youths’ experience with T1D would benefit from additional research on the experience and expression of worry among young children with T1D. Similarly, these results raised questions for future research regarding the function of distraction and humor among youth and young adults with diabetes, and how this may differ based on the stressor.

Clinically, understanding common types of T1D worries and recognizing that worries about blood glucose extend beyond direct fears of hypo- and hyperglycemic episodes can inform the scope of issues medical providers and behavioral health clinicians’ address in care. For example, interventions targeting self-efficacy fears may be helpful for children, particularly as they take on increasing T1D self-management responsibility, and interventions to help youth build effective coping strategies may help treat diabetes-specific worries and improve quality of life. Given research demonstrating an association between perceived social support and coping among adults with diabetes (Ramkisson et al., 2017) and our finding that youth of all ages commonly described coping strategies that involved close others, interventions may focus on helping youth recognize and engage their available social supports, including screening for diabetes-related worries and teaching socially isolated youth effective social skills and strategies to grow their support network. Overall, results of this study highlight the numerous and wide-ranging worries and coping strategies youth with T1D experience and use across pediatric developmental stages.

Funding

Grant support for this research came from the Leona M. and Harry B. Helmsley Charitable Trust (2015PG-T1D084, PIs: M.E.H. and B.J.A.). M.E.H. and B.J.A. also had effort support from the National Institutes of Health (1K12DK097676, PI: B.J.A.).

Conflicts of interest: None declared.

Contributor Information

Lindsay Taraban, Department of Pediatrics, Baylor College of Medicine and Texas Children’s Hospital, USA.

Rachel Wasserman, Nemours Children’s Health and University of Central Florida College of Medicine, USA.

Viena T Cao, Department of Pediatrics, Baylor College of Medicine and Texas Children’s Hospital, USA.

Sahar S Eshtehardi, Department of Psychological Health and Learning Sciences, University of Houston, USA.

Barbara J Anderson, Department of Pediatrics, Baylor College of Medicine and Texas Children’s Hospital, USA.

Debbe Thompson, USDA/ARS Children’s Nutrition Research Center, Baylor College of Medicine, USA.

David G Marrero, The University of Arizona Health Sciences, USA.

Marisa E Hilliard, Department of Pediatrics, Baylor College of Medicine and Texas Children’s Hospital, USA.

References

  1. Balfe M., Doyle F., Smith D., Sreenan S., Brugha R., Hevey D., Conroy R. (2013). What’s distressing about having type 1 diabetes? A qualitative study of young adults’ perspectives. BMC Endocrine Disorders, 13(1), 1–14. [DOI] [PMC free article] [PubMed] [Google Scholar]
  2. Beveridge R. M., A. Berg C., J. Wiebe D., L. Palmer D. (2006). Mother and adolescent representations of illness ownership and stressful events surrounding diabetes. Journal of Pediatric Psychology, 31(8), 818–827. [DOI] [PubMed] [Google Scholar]
  3. Beverly E. A., Ritholz M. D., Dhanyamraju K. (2021). The buffering effect of social support on diabetes distress and depressive symptoms in adults with type 1 and type 2 diabetes. Diabetic Medicine: A Journal of the British Diabetic Association, 38(4), e14472. [DOI] [PubMed] [Google Scholar]
  4. Braun V., Clarke V. (2012). Thematic analysis. In Cooper H., Camic P. M., Long D. L., Panter A. T., Rindskopf D., Sher K. J. (Eds.), APA handbook of research methods in psychology, vol. 2: Research designs: Quantitative, qualitative, neuropsychological, and biological (pp. 57–71). American Psychological Association. [Google Scholar]
  5. Braun V., Clarke V. (2013). Successful qualitative research: A practical guide for beginners. Sage. [Google Scholar]
  6. Cartwright-Hatton S. (2006). Worry in childhood and adolescence. In G. C. L. Davey & A. Wells (Eds.), Worry and its psychological disorders: Theory, assessment and treatment (pp. 81–97). Wiley Series in Clinical Psychology. [Google Scholar]
  7. Castensøe‐Seidenfaden P., Teilmann G., Kensing F., Hommel E., Olsen B. S., Husted G.,R. (2017). Isolated thoughts and feelings and unsolved concerns: Adolescents’ and parents’ perspectives on living with type 1 diabetes—A qualitative study using visual storytelling. Journal of Clinical Nursing, 26(19–20), 3018–3030. [DOI] [PubMed] [Google Scholar]
  8. Ciarrochi J., Bailey A. (2008). A CBT-practitioner's guide to ACT: How to bridge the gap between cognitive behavioral therapy and acceptance and commitment therapy. New Harbinger Publications. [Google Scholar]
  9. Compas B. E., Connor-Smith J. K., Saltzman H., Thomsen A. H., Wadsworth M. E. (2001). Coping with stress during childhood and adolescence: Problems, progress, and potential in theory and research. Psychological Bulletin, 127(1), 87–127. [PubMed] [Google Scholar]
  10. Compas B. E., Jaser S. S., Dunn M. J., Rodriguez E. M. (2012). Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology, 8, 455–480. [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. Ersig A. L., Tsalikian E., Coffey J., Williams J. K. (2016). Stressors in teens with type 1 diabetes and their parents: Immediate and long-term implications for transition to self-management. Journal of Pediatric Nursing, 31(4), 390–396. [DOI] [PubMed] [Google Scholar]
  12. Hilliard M. E., Marrero D. G., Minard C. G., Cao V. T., de Wit M., DuBose S. N., Verdejo A., Jaser S. S., Kruger D., Monzavi R., Shah V. N., Wadwa R. P., Weinstock R. S., Thompson D., Anderson B. J. (2021). Design and psychometrics for new measures of health-related quality of life in adults with type 1 diabetes: Type 1 Diabetes and Life (T1DAL). Diabetes Research and Clinical Practice, 174, 108537. [DOI] [PubMed] [Google Scholar]
  13. Hilliard M. E., Minard C. G., Marrero D., de Wit M., Thompson D., DuBose S., Verdejo A., Monzavi R., Wadwa R. P., Jaser S., Anderson B. J. (2020). Assessing health-related quality of life in children and adolescents with diabetes: Development and psychometrics of the type 1 diabetes and life (T1DAL) measures. Journal of Pediatric Psychology, 45(3), 328–339. [DOI] [PMC free article] [PubMed] [Google Scholar]
  14. Iannotti R. J., Schneider S., Nansel T. R., Haynie D. L., Plotnick L. P., Clark L. M., Sobel D. O., Simons-Morton B. (2006). Self-efficacy, outcome expectations, and diabetes self- management in adolescents with type 1 diabetes. Journal of Developmental and Behavioral Pediatrics, 27(2), 98–105. [DOI] [PubMed] [Google Scholar]
  15. Jaser S. S., Patel N., Xu M., Tamborlane W. V., Grey M. (2017). Stress and coping predicts adjustment and glycemic control in adolescents with type 1 diabetes. Annals of Behavioral Medicine, 51(1), 30–38. [DOI] [PMC free article] [PubMed] [Google Scholar]
  16. Jaser S. S., White L. E. (2011). Coping and resilience in adolescents with type 1 diabetes. Child: Care, Health and Development, 37(3), 335–342. [DOI] [PMC free article] [PubMed] [Google Scholar]
  17. La Greca A. M., Bearman K. J., Moore H. (2002). Peer relations of youth with pediatric conditions and health risks: Promoting social support and healthy lifestyles. Journal of Developmental and Behavioral Pediatrics, 23(4), 271–280. [DOI] [PubMed] [Google Scholar]
  18. Liu J., Bispham J., Fan L., Poon J.-L., Hughes A., Mcauliffe-Fogarty A., Varnado O., Mitchell B. (2020). Factors associated with fear of hypoglycaemia among the T1D Exchange Glu population in a cross-sectional online survey. BMJ Open, 10(9), e038462. [DOI] [PMC free article] [PubMed] [Google Scholar]
  19. Majidi S., Driscoll K. A., Raymond J. K. (2015). Anxiety in children and adolescents with type 1 diabetes. Current Diabetes Reports, 15(8), 1–6. [DOI] [PubMed] [Google Scholar]
  20. Northam E. A., Matthews L. K., Anderson P. J., Cameron F. J., Werther G. A. (2005). Psychiatric morbidity and health outcome in Type 1 diabetes—perspectives from a prospective longitudinal study. Diabetic Medicine, 22(2), 152–157. [DOI] [PubMed] [Google Scholar]
  21. Overgaard M., Lundby‐Christensen L., Grabowski D. (2020). Disruption, worries and autonomy in the everyday lives of adolescents with type 1 diabetes and their family members: A qualitative study of intrafamilial challenges. Journal of Clinical Nursing, 29(23–24), 4633–4644. [DOI] [PubMed] [Google Scholar]
  22. Park C. L., , FolkmanS., & , Bostrom A. (2001). Appraisals of controllability and coping in caregivers and HIV+ men: Testing the goodness-of-fit hypothesis. Journal of Consulting and Clinical Psychology, 69(3), 481–488. [DOI] [PubMed] [Google Scholar]
  23. Pihlaskari A. K., , AndersonB. J., , EshtehardiS. S., , McKinneyB. M., , MarreroD. G., , ThompsonD., & , Hilliard M. E. (2020). Diabetes disclosure strategies in adolescents and young adult with type 1 diabetes. Patient Education and Counseling, 103(1), 208–213. [DOI] [PMC free article] [PubMed] [Google Scholar]
  24. Polanczyk G. V., Salum G. A., Sugaya L. S., Caye A., Rohde L. A. (2015). Annual research review: A meta‐analysis of the worldwide prevalence of mental disorders in children and adolescents. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 56(3), 345–365. [DOI] [PubMed] [Google Scholar]
  25. Ramkisson S., , PillayB. J., & , Sibanda W. (2017). Social support and coping in adults with type 2 diabetes. African Journal of Primary Health Care & Family Medicine, 9(1), 1–8. [DOI] [PMC free article] [PubMed] [Google Scholar]
  26. Skedgell K. K., , CaoV. T., , GallagherK. A., , AndersonB. J., & , Hilliard M. E. (2021). Defining features of diabetes resilience in emerging adults with type 1 diabetes. Pediatric Diabetes, 22(2), 345–353. [DOI] [PMC free article] [PubMed] [Google Scholar]
  27. Tönnies T., Imperatore G., Hoyer A., Saydah S. H., D’Agostino R. B. Jr, Divers J., Isom S., Dabelea D., Lawrence J. M., Mayer-Davis E. J., Pihoker C., Dolan L., Brinks R. (2019). Estimating prevalence of type I and type II diabetes using incidence rates: The SEARCH for diabetes in youth study. Annals of Epidemiology, 37, 37–42. [DOI] [PMC free article] [PubMed] [Google Scholar]
  28. Van Duinkerken E., Snoek F. J., De Wit M. (2020). The cognitive and psychological effects of living with type 1 diabetes: A narrative review. Diabetic Medicine, 37(4), 555–563. [DOI] [PMC free article] [PubMed] [Google Scholar]
  29. Vasey M. W., Crnic K. A., Carter W. G. (1994). Worry in childhood: A developmental perspective. Cognitive Therapy and Research, 18(6), 529–549. [Google Scholar]
  30. Vloemans A. F., van Beers C. A. J., de Wit M., Cleijne W., Rondags S. M., Geelhoed-Duijvestijn P. H., Kramer M. H. H., Serné E. H., Snoek F. J. (2017). Keeping safe. Continuous glucose monitoring (CGM) in persons with Type 1 diabetes and impaired awareness of hypoglycaemia: A qualitative study. Diabetic Medicine, 34(10), 1470–1476. [DOI] [PubMed] [Google Scholar]
  31. Wu Y. P., Thompson D., Aroian K. J., McQuaid E. L., Deatrick J. A. (2016). Commentary: Writing and evaluating qualitative research reports. Journal of Pediatric Psychology, 41(5), 493–505. [DOI] [PMC free article] [PubMed] [Google Scholar]
  32. Wysocki T., & , Greco P. (2006). Social support and diabetes management in childhood and adolescence: influence of parents and friends. Current Diabetes Reports, 6(2), 117–122. [DOI] [PubMed] [Google Scholar]
  33. Zimmer-Gembeck M. J., & , Skinner E. A. (2011). Review: The development of coping across childhood and adolescence: An integrative review and critique of research. International Journal of Behavioral Development, 35(1), 1–17. [Google Scholar]

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