Mirroring Life of Adolescents with Type 1 Diabetes—An Outline of Key Aspects

Abstract

Background: Studies have shown that adolescents find diabetes management difficult and struggle with incorporating diabetes management into their daily life. A focus on issues adolescents perceive as important is necessary when designing high quality interventions aimed at improving health outcomes for adolescents with T1D. The present study aimed to provide: (1) a broad comprehensive reflection on issues adolescents with diabetes perceive as important; (2) a basis for developing a ‘Family Mirror’, specifically designed to generate dialogue in families with an adolescent with T1D. Methods: The qualitative data originate from 11 workshops with a total of 47 adolescents with diabetes between 8 and 18 years of age. Data were systematically analyzed. Results: Seven overarching, empirical themes were identified that provided an outline of aspects important to adolescents living with T1D: (1) Support, (2) Understanding, (3) Worries, (4) Limitations, (5) Independence, (6) Perceptions, and (7) Management. Several empirical indicators elaborated on the themes, thus creating a comprehensive reflection of life with T1D during adolescence. Conclusions: Given our comprehensive and broad approach to uncovering key aspects adolescents with diabetes perceive as important, we trust that the findings can be used as a basis for designing interventions intended for adolescents with T1D.

1. Introduction

Type 1 diabetes (T1D) is one of the most common chronic illnesses in childhood and adolescence [1], and its incidence is increasing worldwide [2]. T1D requires a complex, daily self-management regime, including counting carbohydrates, balancing insulin with physical activity, and frequent monitoring of blood glucose [3]. Studies have shown that adolescents, in particular, find diabetes management difficult and demanding [1,4,5,6]. They struggle with incorporating diabetes management into their daily life [7,8,9], and with the feeling of being different from their peers [5,10]. Further, during adolescence, responsibility for diabetes management is slowly transferred from parents to the adolescent [11]. This often causes difficult changes in intra-familial roles [12], potentially leading to conflicts within the family [11,13].

Possible explanations for deteriorating metabolic control during adolescence include physiological changes during puberty and associated insulin resistance as well as poor adherence to therapy [14], communication difficulties between adolescents and their parents/health professionals [15,16,17], and social life taking priority over diabetes management [7,18,19].

One review of the research literature highlighted the need for high quality, well-designed interventions aimed at improving health outcomes for young people with T1D [20], and a recent review found a lack of adequate psychosocial interventions targeting 7- to 13-year-olds [21]. Thus, interventions meant to support adolescents with T1D are needed.

From 2015–2017, a dialogue tool ‘The Family Mirror’— was developed at Steno Diabetes Center Copenhagen—As part of a family toolbox for families living with type 2 diabetes [22]. The Family Mirror encourages participants to construct an image of themselves using cards with pictograms or quotes. The cards address support, everyday life, worries, roles, communication, and knowledge related to life with diabetes. The intention being to help participants express, reflect on and discuss challenges and opportunities within the family [22]. The Family Mirror has been evaluated and found to be useful when involving family members in the daily care of adults with type 2 diabetes [23]. Further, The Family Mirror turned out to be meaningful as a dialogue tool for data collection, as it leads to reflections on relevant issues in a tangible and intuitive way.

Following our good experiences with The Family Mirror, modified versions have been successfully used in workshops with other target populations, including children and adolescents with T1D [24,25]. The overall idea and design of the tool were retained, but several statements and pictograms concerning, e.g., partners and offspring were left out because they were not relevant to the daily life of children and adolescents. This showed us that the Mirror had potential as an intervention meant to facilitate dialogue about everyday life with diabetes among adolescents, as well as great potential to be used in peer networks, dialogues between and within families, and in the diabetes clinic.

However, because The Family Mirror was originally developed for an adult population, it may not include all issues of perceived significance and relevance to an adolescent population. If we are to develop appropriate interventions to help adolescents cope with diabetes, adjust to their situation and improve their quality of life, more specific knowledge about what is important to them regarding their unique experiences, difficulties and needs is crucial [26,27].

By identifying and elaborating specific perceptions, thoughts, and emotions expressed by adolescents with T1D, the present study aimed to provide: (1) a broad comprehensive reflection on issues adolescents, across age and gender, with diabetes perceive as important and (2) a basis for developing a new Adolescent Family Mirror specifically designed to generate dialogue in families with an adolescent with T1D.

2. Materials and Methods

To mirror everyday life as experienced by adolescents with diabetes as comprehensively as possible, the perceptions, thoughts, and emotions expressed by adolescents participating in three recent qualitative studies were re-analyzed.

The data used in the present exploratory study originate from 11 needs assessment workshops with adolescents conducted by Steno Diabetes Center Copenhagen (SDCC) in three separate, yet similar, studies aiming to reveal the challenges and facilitators perceived by adolescents living with T1D. In total, data from 47 adolescents with diabetes, between the age of 8 and 18 years, were analyzed. Adolescence is viewed, in accordance with Schilling et al., as the period beginning with pre-adolescence (8–11 years of age) and ending with late adolescence (17–19 years) [28].

Five of the workshops originate from a study exploring intervention needs among families with a 13- to 18-year-old with T1D in a rural area of Denmark, the aim being to improve the overall diabetes approach at the local pediatric diabetes clinic [24]. Three of the workshops originate from an unpublished study exploring daily life with diabetes among 13- to 18-year-olds and their families, investigating the role of important relations in diabetes management. Three workshops originate from a study exploring the transition from adolescence to early adulthood [29]. While the previously published analyses were individual needs assessments focused on uncovering aspects of daily life with diabetes in specific contexts using various sociological theories, this present analysis aims to uncover broad themes, as expressed by adolescents, across contexts without applying theories.

Across all workshops, the same tools were used to facilitate dialogue among adolescents with T1D [22,24,25]. Author DG participated in all workshops, confirming that participants were presented with the same topics. These circumstances render the three datasets comparable and analyzable as a single coherent dataset.

Systematic text condensation, as described by Malterud (2012), was used to analyze the data. This was done manually. We listened through all original audio files of the workshops and read all verbatim transcripts of the workshops to familiarize ourselves with the data. During the first round of analysis, the data were systematically examined, and preliminary themes were identified across all workshops. During a second round of analysis, subthemes were constructed to elaborate on the themes identified in the first round of-analysis. The themes and subthemes were thoroughly discussed among the authors. Overlapping categories were merged and other categories were split to ensure distinct themes and subthemes. To move closer to finding actual, tangible content for the Adolescent Family Mirror, empirical indicators [30] were identified within each subtheme.

The final themes presented below are the ones that stood out across the entire dataset including data from the three original studies. As such, this is not an attempt to further explore existing themes or to dig deeper into specific findings and tendencies. Instead, it should be understood as a broad overview of the themes that matter the most to adolescents living with T1D.

3. Results

Seven overarching, empirical themes were identified across the data: (1) Support, (2) Understanding, (3) Worries, (4) Limitations, (5) Independence, (6) Perceptions, and (7) Management. In presenting the themes below, we have highlighted (in boldface type) empirical indicators i.e., word-strings illustrating specific aspects that will be included in the new version of the Family Mirror Tool.

3.1. Theme 1: Support

Social support was a prominent theme among all the adolescents. There were two primary contexts: (1) with friends and (2) at home.

The adolescents expressed a strong feeling of support from their friends in relation to diabetes. They described having good friends to talk to and that their friends were helpful if they needed anything. Some adolescents appreciated it when their friends would remind them about diabetes management.

In general, adolescents seemed to put effort into not letting diabetes impact their friendships. Accordingly, some found it difficult to express their needs in relation to diabetes, e.g., their need for their friends to wait while they managed their diabetes. Participants felt that their friends did not always have the patience to wait for them while they measured their blood glucose, which led to frustration because the adolescents did not want to be a burden owing to their diabetes. This resulted in some adolescents skipping or postponing their diabetes management tasks.

Several adolescents valued that their friends would help them focus on other things than diabetes and felt no need to talk about diabetes with their friends. It was important to them that their friends did not look at them differently because of diabetes. Thus, many would hesitate telling friends about it, e.g., at a new school, although they also felt the importance of their friends knowing about diabetes so they could pay attention in case of hypoglycemia. A few adolescents did not desire their friends’ involvement in diabetes. Further, some adolescents expressed worries that diabetes would affect their relationship with a potential partner. They feared that their diabetes equipment would make them less attractive to a potential partner and that potential partners might lose interest when they saw the pump.

The supportive roles of friends when going out at night varied among the adolescents. Some adolescents were not completely sure that their friends would know what to do if they were to experience low blood glucose. This made them uncomfortable, but it did not stop them from going out with their friends. Others had made it completely clear to their friends what they should do if anything happened.

Common among many adolescents was the perception that their family’s worries did not help them, and that these worries were perceived as annoying. Some adolescents said that they did not feel like talking about diabetes if family members asked them about it. Accordingly, for some adolescents, talking about diabetes caused conflicts in families. Many adolescents felt they were capable of controlling diabetes themselves and did not need their family’s involvement. However, at other times, the family’s involvement was helpful and appreciated.

Some adolescents felt supported by their siblings in diabetes management, and that their sibling would cheer them up and help them.

Generally, siblings were described as a motivation to take care of diabetes.

Other adolescents felt that their siblings made annoying comments about diabetes. Some did not really talk about it with their brother or sister, though their siblings knew what to do if anything were to happen.

3.2. Theme 2: Understanding

The adolescents generally felt that other people do not understand them and cannot imagine what it is like to live with diabetes.

Adolescents also reported that it was too easy for other people who do not have diabetes to say what should be done and felt that other people, including their friends, could not understand in what way living with diabetes is difficult. They expressed feeling alone with their illness and wished that more people understood and had knowledge about their disease. They shared a desire to know and talk to somebody who could understand them.

Adolescents further expressed their frustration about people’s misconceptions about T1D. They experienced how people thought diabetes was a result of eating too much sugar or they confused T1D with T2D. Further, adolescents received comments from strangers, teachers, friends and family members about eating sugar. The misperception, that they are not allowed to eat sugar, was a source of frustration.

The adolescents did not like to be treated differently because of their diabetes, and one adolescent spoke about the feeling of being watched while eating at school or among friends, which made this adolescent reluctant to eat with other people.

Because of the experienced lack of understanding and the fear of being treated differently, the adolescents hesitated or chose not to tell people about their diabetes.

It was essential for adolescents not to be perceived as ill and vulnerable, and some had a hard time talking about diabetes because they did not consider themselves ill and did not want people to think of them as ill.

3.3. Theme 3: Worries

Hypoglycemia and fear of collapsing were ongoing worries among adolescents. Furthermore, some adolescents expressed serious concerns about diabetes impacting their future. They feared that poorly regulated diabetes would impact their future health or that they would die at an early age.

Some adolescents also worried about their future family life. They worried about the heredity of diabetes in terms of passing it on to their unborn children, and if this would impact their chances of finding a partner.

The adolescents worried about being a burden to their family. They did not want diabetes to steal the attention from their siblings, and some expressed worries that their mother was too affected by their diabetes.

Accordingly, some adolescents avoided worrying their family, by choosing not to tell family members about their blood glucose values. Also, in school, asking for help and talking about their diabetes were associated with a feeling of burdening others.

3.4. Theme 4: Limitations

Some adolescents described feeling limited by diabetes both in their everyday life and their future life, whereas others explained that living with diabetes does not cause limitations once you have learned to manage your blood glucose.

It was crucial for them not to draw any attention to their diabetes equipment. Hence, how to wear and carry their diabetes equipment in a discrete way was a frequently discussed topic among the adolescents. Some of them felt that there were clothes they could not wear because of their equipment. Some of them did not want to carry their items on them during sports activities and found the pump irritating when running.

To others, it was their fear of hypoglycemia that limited their participation in sports and exercise. They elaborated on how dealing with hypoglycemia was especially troublesome during sports and, e.g., having to sit down to drink juice was experienced as an irritation during team sports. When at school, keeping up with friends, e.g., following classmates from one classroom to another, and busy school days made it difficult for adolescents to implement diabetes management in their daily life. Some adolescents described how their blood glucose affected their concentration at school, which was burdensome during school tests because nervousness caused blood glucose to be difficult to control.

Adolescents further described being bothered by getting bruised when the equipment, which is attached to their body, accidently hits a doorframe or when other people accidently bump into them. Others explained that some of the equipment was not carried at school due to the risk of it breaking.

The adolescents expressed frustration with the fact that diabetes interrupted their plans. They shared frustrations that high blood glucose levels made them and their family change their plans and felt that diabetes was a disturbance to their family life. Some felt that diabetes prevented them from travelling or moving to other countries, and some were frustrated that diabetes made it more complicated to get into certain education programs or jobs, e.g., police officer, home guard or babysitter. Some adolescents did not feel limited by their diabetes when going out with friends. They even spoke about the advantages of having diabetes when going out, e.g., skipping the queue for the toilet or getting free handouts of water. Some adolescents had chosen to refrain from drinking alcohol as they felt that it meant they could not control their diabetes. Some of them were at peace with this decision, while others felt that they were missing out on something.

3.5. Theme 5: Independence

For the majority of adolescents, their mother was the primary caretaker regarding diabetes management because she was the one who showed the most concern about diabetes. While some appreciated their mother’s help, others expressed troublesome communication with their mother about diabetes.

Many adolescents disliked their parents’ questions and involvement in diabetes. They felt annoyed by their parents’ comments and constant reminders, which sometimes caused conflicts. Adolescents felt misunderstood or did not want to talk about diabetes, which might affect their willingness to manage their diabetes. Adolescents agreed that parents need to stop believing that not measuring blood glucose is the end of the world, and that they should stop using scare tactics.

One recurrent theme for older adolescents included issues related to going out at night. Although parents’ help and support were appreciated, the adolescents where slightly annoyed by their parents’ comments and reminders about alcohol intake. They did not feel they needed their parents’ reminders about how to manage their insulin or check on their blood glucose because they felt capable of taking care of it themselves.

3.6. Theme 6: Perceptions

The adolescents strongly stressed the approach that they are more than their diabetes.

Some adolescents expressed their frustration and wished they did not have diabetes. They described diabetes as a burden that you must take care of, explaining that they are under pressure every day. However, many adolescents additionally expressed acceptance of having diabetes. They explained how they had learned to live with it despite frustrations and that they felt more comfortable with being asked questions about diabetes now than they did earlier in their lives.

A few adolescents described feeling more powerful, strong, responsible, and mature after being diagnosed with diabetes and generally, the adolescents reported that diabetes was always in the back of their mind, and they did not want it to influence their life negatively. Others stressed the importance of a healthy lifestyle, and a couple of them expressed a desire to live healthy because they found it helpful in regulating their diabetes.

Though they received their family’s help, adolescents had a strong feeling that they were responsible for controlling their diabetes. In general, the adolescents perceived diabetes as their own responsibility and were conscious that they had to learn how to manage diabetes independently of their parents.

Adolescents explained that they preferred to take care of diabetes themselves because if anything went wrong, they had sole responsibility. Generally, they thought they were capable of managing their diabetes if they really put their mind to it.

Some adolescents hoped or expected to focus more on diabetes in the future. They accepted their lack of focus and hence their reduced control over diabetes because of their ambition to do better later in life.

3.7. Theme 7: Management

Diabetes management was difficult for the adolescents. They explained how they often had a hard time maintaining their focus and that they would sometimes even forget about their diabetes care and needed to be reminded of it. Adolescents reported that diabetes management became more challenging after beginning high school.

Although they were aware of the importance of diabetes management and wanted to become better at regulating their blood glucose, they did not always pay adequate attention to their diabetes management. They explained their lack of attention by referring to their developmental stage in life and the ongoing support from the family. Some adolescents explained that they completely forgot about their diabetes when they were drunk.

In the diabetes clinic, adolescents appreciated it when health care professionals asked them questions about who they were as persons and not only about their diabetes. They appreciated health care professionals who would speak to them instead of to their parents. Many adolescents felt that their nurse genuinely cared for them as a person and not only about their diabetes. Hence, they felt supported by their nurse. Meanwhile, some adolescents expressed discontent with their doctors. They felt blamed by their doctors for not having satisfactory blood glucose; they thought their doctors did not understand them and were not trying to understand them. It seemed that adolescents whose doctor asked about issues not directly related to diabetes also felt supported by their doctor.

Some adolescents reported disliking their dietician, who they felt represented strict and constant control of food intake. By offering them food plans that they could not relate to, adolescents felt that their dietician did not understand them or their lives. One adolescent explained that the food plan would contain traditional Danish dishes which she rarely ate.

The effect of alcohol on their blood glucose, hence on regulation of diabetes, posed a challenge for adolescents. Some of them wished they had acquired more knowledge about alcohol’s effect on blood glucose before beginning to drink alcohol; they expressed a desire to talk with other people with diabetes and learn from their experiences with alcohol.

They explained that they did not view the lack of blood glucose measures as a problem, because they were confident that they would be able to take action if something happened. Meanwhile, adolescents described having a fear of hypoglycemia while drinking alcohol because they had difficulties detecting hypoglycemia while drunk.

Table 1. An overview of the seven themes, subthemes and examples of data extracts.

Theme	Sub-Theme	Empirical Indicators	Examples of Data Extracts
1. Support	Friends will help	Good friends to talk to Friends are helpful Friends will remind them	“Well they just remind me to measure and that I’m good enough as I am”
	Burden to friends	Difficult to express needs Friends do not always have the patience to wait Do not want to be a burden Skip or postpone diabetes management tasks	“You don’t want to be that person: ‘Oh you’re just a bad friend because you’re not waiting-ish.’ That it becomes a bad thing, or worse than it already is.That you make it worse for yourself”
	Friends’ involvement	Friends will help them focus on other things Feel no need to talk about diabetes Important that friends do not look at them differently Hesitate telling friends Friends know about diabetes so they can pay attention in case of hypoglycemia Do not desire their friends’ involvement	“I don’t put any responsible on them, but I just inform them, ‘okay maybe you should just be aware of this and that’, but it doesn’t play a very big part, so you don’t give them too much responsible”
	Partners	Fear that diabetes equipment will make them less attractive Potential partners might lose interest	“(…) when I get a boyfriend one day, I hope he will respect me for who I am… that I have a pump and I have to prick myself”
	Going out at night	The supportive roles of friends when going out at night Made it completely clear to their friends	“Okay guys, we’re going out.I might get hypoglycemia”
	Family strain and support	Family’s worries do not help Worries are perceived as annoying Talking about diabetes cause conflicts in families Do not need their family’s involvement The family’s involvement is helpful and appreciated	“Then I become completely hysterical and then my parents they might become like ‘Okay, now you need to get a grip’ And I’m like ‘Well, you’re not the ones who have diabetes. It’s me’. And then they’ll say ‘Well, this is not very fun for us either to shoot needles into you and to see you feeling like that’ And then I’ll say ‘No, but you are not the ones who are feeling bad’. Then we might get into a fight about who is having the hardest time”
	Siblings	Supported by their siblings Sibling cheer them up and help them Siblings are described as a motivation Siblings make annoying comments Not really talk about it with their brother or sister	“So, she wants to measure me and often she’s like: ‘Can I measure before dinner?’ Because she knows that I don’t feel like it”   “Well, I have my brother, my younger brother, and well, he plays a part—in that I don’t want him to experience anything happening to me”
2. Understanding	Lack of understanding	Other people do not understand them Feel alone with their illness Wish that more people understood To know and talk to somebody who could understand them.	“So, if I try to say something, then they just come up with this one: ‘Can’t you just measure?’ And things like that. And then I’m thinking, ‘no actually, I can’t just measure, it’s not as easy as you think’. So, I’d like to just have that one person who you can talk to and be with”
	Misconception	Frustration about people’s misconceptions Comments from strangers Source of frustration	“Well you know, the thing about being on a special diet at birthday parties ‘Oh cake, you can’t have that’”
	Treated differently	Do not like to be treated differently Reluctant to eat with other people Fear of being treated differently	“I experience, that when I talk about it, I’m treated differently. I’m treated with much more concern. ‘You just tell me if you need…’ ‘No, it actually doesn’t mean anything. Just treat me normally’”
	Importance	Hesitate or choose not to tell people about their diabetes Essential for adolescents not to be perceived as ill and vulnerable	“So, it’s this thing again, that I don’t think that diabetes should play such a big role like it does. I often feel it’s more important for them than for me”
	Identity	Do not consider themselves ill Do not want people to think of them as ill	“So in a way, it’s annoying, if I can put it like that, to call yourself sick, and talk about it as if it’s a huge burden”
3. Worries	hypoglycemia	Hypoglycemia and fear of collapsing	“I can’t do anything because I’m afraid to get hypoglycemia and die”
	Future	Concerns about diabetes impacting their future Impact their future health Die at an early age Worried about their future family life Heredity of diabetes	“And I also had a time when I felt like, I didn’t ever want to have children, because what if I gave it to them too?”
	Burden	Worries about being a burden to their family Do not want diabetes to steal the attention from their siblings Worries that their mother was too affected by their diabetes Choosing not to tell family members about their blood glucose values	“It’s like they feel it’s their fault that I have diabetes, even though it’s a chronic disease. So, I’ve started feeling like a burden to my family. That’s why I don’t talk about it with my family, because they take it more personally than they should”
	Equipment	Not to draw any attention to their diabetes equipment How to wear and carry their diabetes equipment in a discrete way Clothes they cannot wear because of their equipment Do not want to carry their items on them during sports activities Pump irritating when running	“It’s super smart, because then it’s stuck there, well it’s attached to my buttock you know? Then it doesn’t peep out, and if you wear a dress, then you can still wear it without having it stuck all kinds of strange places (about a clips)”
4. Limitations	Sport	Fear of hypoglycemia that limited their participation in sports Dealing with hypoglycemia was especially troublesome during sports	“And then I think ‘Okay, now you just need to get home.’ But I can’t decide if I should run to get home quickly or just walk to take it easy, and then that’s just when my phone runs out of battery. And then I’m like ‘what do I do now?’ (…) So, I had to just run because I was like ‘ I will collapse any minute’”
	School	Busy school days make it difficult Blood glucose affects their concentration Burdensome during school tests	“when you have tests or exams. Then I sometimes think blood glucose is a devil to control. The adrenalin and then it goes ‘puff,’ and you’re on 20 (glucose level), and you can’t get it down.That’s when I’m most irritated”
	Unpredictability	Nervousness cause blood glucose to be difficult to control When other people accidently bump into them Diabetes interrupts their plans High blood glucose levels make them and their family change their plans Disturbance to their family life	“(…) when I walk around the handicraft place at school, I can’t bring it (scanner), because it will break, and then I still have to go to my locker to get it, right?”
	Missing out	Prevent them from travelling Complicated to get into certain education programs or jobs Chosen to refrain from drinking alcohol Missing out on something	“I will say, I’ve had periods where I’ve felt like ‘I can’t live alone. I can’t travel alone. I can’t do anything because I’m afraid I’ll get hypoglycemia and die.
5. Independence	Annoyance	Mother is the primary caretaker Troublesome communication with their mother Disliked their parents’ questions Annoyed by their parents’ comments and constant reminders Should stop using scare tactics Annoyed by their parents’ comments and reminders about alcohol intake	“‘Oh, now you shouldn’t eat another cookie’ or something, and then I always think like, ‘Well my blood glucose is low. You don’t know that.’ And then I need to explain that, but they will still watch me, which might be fair, but it can still be too much”
	Capability	Feel capable of taking care of it themselves	“And I have everything under control. I don’t feel like they have faith in that I can manage it myself. It sounds like a 3-year-old, but I can handle it on my own”
6. Perceptions	Illness identity	More than their diabetes Wish they did not have diabetes	“It’s very important to me that my diabetes doesn’t come with me, I come with my diabetes”
	Burdensome	Diabetes as a burden Under pressure every day	“Sometimes, I think life just sucks. Especially when you’re an adolescent”
	Adaptation	Acceptance of having diabetes Learned to live with it despite frustrations More comfortable with being asked questions about diabetes now than earlier Feeling more powerful, strong, responsible, and mature after being diagnosed with diabetes	“I thought it was unfair that everybody else – well, that I was the only one who got the questions right? But it’s not unfair, this is just how it is, how the cards were dealt for me”
	Circumstance	Diabetes is always in the back of their mind Desire to live healthy	”And in a way, it (diabetes) forces you to keep on living like that (to live healthy), and I actually appreciate that”
	Responsibility	Receive their family’s help Perceive diabetes as their own responsibility Prefer to take care of diabetes themselves They have sole responsibility	“I’m the only one who can take care of it. I have to take care of it. My nurse can’t take care of it, my mom can’t take care of it, nobody can take care of it for me, it’s my ‘monkey’”
	Postponement	Capable of managing their diabetes if they really put their mind to it Focus more on diabetes in the future Accept their lack of focus and hence their reduced control over diabetes Ambition to do better later in life	“I think if I start being a bit stronger minded and measure at the right time and tap in the right amount of insulin, then it will work. But I don’t worry too much about it right now, because I know that in the teenage years things never really go as planned”
7. Management	Challenges	Forget about their diabetes care More challenging after beginning high school Do not always pay adequate attention to their diabetes management Forget about their diabetes when they are drunk	“Compared to primary school where I had more time to think about it and keep it in the back of my mind all the time. Now it’s easier to forget because you’re more stressed out in a different way”   “It annoys me a bit, that I haven’t really realized that I need to pull myself together”
	Communication	Appreciated it when health care professionals ask them questions about who they are as people and not only about their diabetes Speak to them instead of to their parents	“(…) when he (the doctor) gives me good feedback and says that I’m good at managing it, it gives me motivation to keep doing well”
	Health professional	Nurse genuinely care for them as a person Supported by their nurse Blamed by their doctors Do not understand them Dietician represents a strict and constant control of food intake	“Last time I went to a dietician I got this food plan. (…) And it was completely different from what I’m used to [eat]. Okay, I can’t relate to this.. Also, these food plans they often contain things like gravy and potatoes. ‘So, you need to eat less gravy and potatoes’ [pretending to read the food plan]. As if that’s the type of food that I eat”
	Confidence	Will be able to take action if something happens	“Well, if I have to take enough insulin in combination with alcohol (…), then my mom always reminds me about it, which I find rather annoying, because I know.And I can remember myself”

provides an overview of the seven themes, subthemes and examples of data extracts.

4. Discussion

Seven empirically based themes were identified by talking to 47 adolescents with diabetes. These overarching themes provide an outline of key aspects that are important to adolescents living with T1D. Several empirical indicators elaborate on the themes, thus creating a comprehensive reflection of life with T1D during adolescence. While the perceptions, experiences and feelings found among adolescents are extensively described in the existing literature, most previous studies have focused on a few specific aspects and have not described the full life experience, as we do with our broad analysis.

4.1. Social Support

In the present study, the importance of social support for adolescents was permeated by an ongoing attempt to implement diabetes management in their social life. While expressing a desire for better diabetes management, they would choose to skip or postpone diabetes management if they did not feel supported by their friends. This mechanism is well-known in the existing literature describing how adolescents sometimes let social activity take priority over diabetes management [7,18,19].

Balancing between engaging and taking no notice, friends were expected to be involved in diabetes management, but at the same time, adolescents valued that their friends made them focus on things other than diabetes. A recent study found that good friends could make diabetes easier just by being there and directing the focus to other things [8], underlining that support can involve both active engagement and passive presence.

A study by Thomas et al. (1997) showed that adolescents believe they are constantly being judged by peers and that concern about peers’ reaction may result in deviation from the diabetes care regimen [31]. In the present study, this was demonstrated by adolescents sometimes avoiding telling new friends about their diabetes due to their fear of negative reactions. Adolescents hiding diabetes from others in order to avoid social stigma has also been described [8,18].

The adolescents in the present study experienced parental involvement both as a help and an irritation. This duality was expected, as adolescents generally simultaneously strive for autonomy and need parental support in the transition from childhood to adulthood. Adolescents with T1D must take control of their own life and take over the responsibility for diabetes care from their parents. Meanwhile, they need help and a safety net to support this shifting of responsibility [8]. Frustration about parental engagement in diabetes occasionally made adolescents less willing to manage their diabetes. This paradox of parents engaging to help improve diabetes management, but provoking the contrary, has been described previously [9,19,32,33,34].

One novel finding in the present study was that siblings were perceived to be motivational or supportive in relation to the adolescents’ diabetes management. This finding has not previously been described in the research literature, as there is a shortage of sibling studies in the pediatric diabetes research.

4.2. Understanding

Adolescents’ desire for person-centered and less target-driven care has been extensively described in recent literature [7,35,36]. Moreover, in the present study, adolescents expressed a desire for health care professionals to see them as a person and not only pay attention to their blood glucose numbers. They did not appreciate when health care professionals talked to their parents instead of them. According to Starkman et al. (2019), a feeling of depersonalization may result in disengagement from diabetes. Thus, a vicious circle can be created when adolescents display poor blood glucose results to health care professionals, who, as a consequence, focus on these results instead of the individual [16]. Our findings also show that adolescents who experienced health care professionals who use a person-centered approach felt motivated and supported in their diabetes management. Holistic health care interactions that acknowledge the social context of glucose control and that are responsive to young people’s everyday struggles were emphasized by Sanders et al. (2019) [7].

4.3. Worries

Some adolescents feared long-term effects of hyperglycemia in the future. They expressed fear of becoming too ill at an early age or not getting to grow old. Similar worries among adolescents were described by King et al. (2017). The fear of having a severe case of hypoglycemia was a major concern among adolescent in our study, also in relation to alcohol. Adolescents wished they had known about alcohol’s effect on blood glucose levels. The same need among adolescents for knowledge about how to handle diabetes in relation to alcohol was found by Strand et al. and King et al. [8,35].

4.4. Limitations

The adolescents found diabetes management to be difficult to implement during busy school days. Previous studies have also described adolescents’ struggles with incorporating diabetes-related routines into their busy school days and sometimes unpredictable lives [7,8,9]. This indicates that adolescents may compromise their diabetes management to keep the disease from limiting their participation at school. Along the same lines, Dickinson O’Reilly et al. revealed that adolescents often chose to do what friends were doing without worrying about the consequences [18].

4.5. Independence

The adolescents in the present study did not experience parental reminders and comments as helpful because they were striving for autonomy in their diabetes management. The issue of parental help versus autonomy has been described in several studies [8,9,17,37]. Our findings show that adolescents’ desire for autonomy in diabetes management sometimes collided with their perception that their parents were taking too much responsibility. This could cause conflicts between parents and the adolescent, something also found by Viklund et al. (2019).

4.6. Perceptions

We generally found that adolescents perceived diabetes more as a lifestyle than an illness; diabetes was not described as a considerable interruption in their life. While some adolescents expressed their acceptance of diabetes management, others were struggling. Thus, the experienced burden of diabetes management varied among them. However, common among adolescents was the need to not self-identify as ill, and for others not to see them as such. Adolescents’ desire to “feel normal” is supported by Commissariat et al. (2016), who suggested that normalization and finding meaning in T1D are important for health care providers in their effort to help patients with self-management [1]. One significant finding in our study was how adolescents strived not to be a burden to others, which kept some of them from asking for help or talking about their illness.

4.7. Management

While struggling to achieve a stable blood glucose level, taking care of diabetes was not always a priority among the adolescents in our study. Dickinson O’Reilly et al. (2004) similarly described how adolescents struggled with knowing that diabetes management must be a priority and still not wanting to make it one [18]. Adolescents in our study often forgot about diabetes management; some of them talked about temporarily accepting avoidance of diabetes management and justified this with their ambition to do better later in life. Fonte et al. studied representations of well-being among adolescents in relation to diabetes management. They suggested that some adolescents may perceive self-management as an obstacle to well-being because they think it is associated with an adult identity, which is incompatible with preserving a kind of socialization that underpins their adolescent identity [38]. Thus, according to Fonte et al. (2019), adolescents see a discrepancy between diabetes self-care and life as a young person.

Only a few qualitative studies have aimed to provide an overarching representation of how adolescents perceive their life with diabetes. A Danish study of 9 adolescents and their parents identified four themes: (1) striving for safety, (2) striving for normality, (3) striving for independence and (4) worrying about future [9]. Our results confirmed and expanded these four themes. Studying a population of 20 adolescents, King et al. (2017) identified five themes of importance to the adolescents: ‘barriers,’ ‘develop skills,’ ‘manage emotions,’ ‘social world,’ and ‘health care professionals’ [35]. In our study, we found no direct indication of a theme focusing specifically on skill development. One possible explanation is that the adolescents in King et al.’s study were between 16 and 21 years of age and, thus, somewhat older than the population in our study. The content of the remaining four themes is also seen in our study, indicating that the themes that emerged here are also relevant for adolescents with T1D outside a Danish context.

4.8. Strength and Limitations

The comprehensive data we used to identify themes of importance to adolescents with diabetes provided us with a broad insight into the life of adolescents with T1D and a unique insight into the adolescent mind. Due to the broad approach of this study, in-depth analyses of the findings were not conducted. Thus, we were not able to elaborate on potential differences between e.g., genders and age groups, which is a limitation of the study. Because the data were originally collected for three different studies, the workshops were carried out with minor variations between them, although one member of the research group participated in all three projects. While recognizing that the different data sources may be seen as a limitation due to the slightly different aims of the original studies, we consider this triangulation a strength, as it reduces the risk of researcher bias, which may occur when data are collected by a static research group. Further, the studies were conducted in three different parts of Denmark, ensuring a broad geographical distribution of participants. Author, DG participated in all workshops, ensuring that participants were presented to the same topics using the same dialogue tools. These circumstances make the datasets comparable, and our analysis of the compiled data indicates that the same topics were important to adolescents across studies. Additionally, analysis of already collected data is an advantage, not only economically and timewise, but also by relieving participants from participating in additional interviews.

Although our results are based on a Danish population and specific indicators may differ from other populations, the overall themes relevant to Danish adolescents consist of aspects of communication, relationships and support that have been confirmed in adolescent studies worldwide.

4.9. Implications

One significant and novel finding from the present study was the role of siblings, who were perceived as supportive and as motivating adolescents in their diabetes care. In our view, it is important to further explore the potential for siblings to serve as resources in adolescents’ diabetes management.

Given our comprehensive and broad approach to uncovering key aspects adolescents with diabetes perceive as important, we trust that the findings can be used as a basis for designing interventions intended for adolescents with T1D. For the same reason, we believe that the themes and indicators can be used as a framework to structure conversations with adolescents about their diabetes. Using such a framework will help address relevant issues that have been raised by other adolescentss. Future research should elaborate on the findings and investigate potential differences between e.g., gender and age.