Adolescents’ experiences living with type 1 diabetes mellitus: A scoping review

Abstract

It is estimated that 1.1 million children and adolescents worldwide currently live with type 1 diabetes mellitus (T1DM), and the occurrence of T1DM is increasing worldwide. The aim of this scoping review was to explore adolescents’ experiences living with T1DM. This scoping review is reported in line with the PRISMA ScR checklist and undertaken using the steps recommended by Kazi et al. Database searches were conducted in Ovid Medline, Ovid Nursing, CINAHL and Google Scholar. A total of 12 studies were included and thematically analysed. The adolescents experienced negative emotions, such as fear, anxiety, irritation, sadness and feeling different from their peers, which disrupted their lives. Adapted support from parents, friends and healthcare professionals is crucial for adolescents coping with T1DM. Diabetes specialist nurses (DSNs) and further research should address medical treatment and consider the psychological aspects of adolescents living with T1DM that affect their self-identity and self-confidence.

Keywords

type 1 diabetes mellitus adolescents experiences scoping review

Introduction

Type 1 diabetes mellitus (T1DM) is one of the most common chronic diseases among children and adolescents, and its incidence is increasing worldwide. It is estimated that approximately 1.1 million children and adolescents worldwide currently live with T1DM.¹ The disease can occur at any age but mostly affects children and adolescents.² T1DM is a serious, incurable autoimmune disease that results from a lack of insulin production by the pancreatic beta cells of the islets of Langerhans.³ Without insulin, people with T1DM will die from hyperglycaemia within days or weeks.⁴ Patients with T1DM must therefore monitor their plasma glucose continuously and inject insulin subcutaneously. Insulin pumps and continuous plasma glucose monitoring have revolutionised diabetes care in recent decades and have provided benefits that are unavailable when patients with T1DM use finger pricking and multiple insulin injection therapy.⁵ A diagnosis of T1DM can lead to significant consequences for patients who must adapt their lives to accommodate demanding treatment, including the risk of developing various complications.^6,7 Complications from T1DM include nephropathy, neuropathy, retinopathy, cardiovascular disease and amputations in some cases.^6,8 Adolescents with T1DM are also at risk of acute complications such as hypoglycaemia and hyperglycaemia. Severe hypoglycaemia is a serious complication of insulin therapy that can result in altered consciousness or loss of consciousness. Unnoticed or untreated severe hypoglycaemia can result in death.⁸ According to Coolen et al.,⁹ adolescents with T1DM reported fear and anxiety related to severe hypoglycaemia, especially after experiencing severe hypoglycaemia while at school, in front of strangers or during sleep.

Hypoglycaemia is particularly challenging and complex to manage in adolescents with T1DM for several reasons. This group often has less predictable patterns related to eating, activity and sleep. Among adolescents, hormonal changes can lead to greater fluctuations in glucose levels and increase the risk of hypoglycaemia.¹⁰ The incidence of hyperglycaemia and diabetic ketoacidosis is another acute life-threatening consequence of T1DM. Adolescents sometimes also prefer hyperglycaemia to a normal plasma glucose, either to prevent severe hypoglycaemia or to achieve weight loss.¹¹ However, maintaining an adequate plasma glucose level decreases the risk of both acute and long-term complications.^6,8 Adolescence can normally be a challenging phase in people's lives; it is a period when physical, neurological, psychosocial and emotional changes take place.⁶ Adolescents often want to be equal to their peers, and the feeling of being different is undesirable.¹² Adolescents are also in a period of developing their identities and detaching from their families, and the desire for independence increases with age. For this reason, help and reminders from parents or others can be experienced as unpleasant.¹³ During puberty, unique challenges of T1DM treatment can occur because the body's hormone levels change, which reduces insulin sensitivity and thus increases the need for insulin.¹³ With the change of potential consequences in health outcomes for adolescents with T1DM, there is a need to improve adolescents’ health services by understanding their experience of living with T1DM.⁷ The aim of this scoping review was to explore adolescents’ experiences of living with T1DM.

Methods

Scoping reviews are useful for examining emerging evidence when it is still unclear what other, more specific questions can be posed and valuably addressed by a more precise systematic review.^14,15 A scoping review was performed in line with the PRISMA-ScR checklist¹⁶ and recommended steps for scoping reviews by Kazi et al.¹⁷

Step 1: Narrowing down a research question

We used the PICOS framework to define this scoping review`s research question¹⁷: How do adolescents experience living with T1DM?

Step 2: Applying the inclusion criteria

We applied the following inclusion criteria:

Peer-reviewed primary qualitative research studies describing adolescents’ experiences living with T1DM for more than six months

Meta-syntheses

Studies of adolescents aged 10–19 years

Studies published in English or Scandinavian languages

Peer-reviewed studies published after 2012

Studies performed in Europe, the United States or Canada

The rationale for including adolescents aged 10–19 years was that this age range conforms with the UNICEF¹⁸ definition of adolescents as individuals aged 10–19 years. Since qualitative approaches are recommended when experiences are studied,¹⁹ we included qualitative research in this scoping review. We included peer-reviewed studies published after 2012 because the medical treatment of patients with diabetes has developed continuously in the past decade. We included studies performed in Europe, the United States or Canada because the prevalence of T1DM among adolescents has increased in Europe, the United States²⁰ and Canada.¹

Steps 3, 4 and 5: Search strategies

Database searches were performed in January 2022 using Ovid Medline, Ovid Nursing and CINAHL (n = 435, see Appendix I). An example of the search process is described in Appendix II. A Google Scholar search was undertaken to identify grey literature. Since no new relevant articles were identified after the first 100 results, we included only the first 100 research articles. The initial searches yielded 535 articles (see Appendix I).

Step 6: Study selection through two-step screening

The study selection process is described in Figure 1. Duplicates were removed using the EndNote 20.3 duplicate identification strategy and then manually.¹⁷ To select studies for inclusion, we used an iterative approach. The authors independently reviewed the titles and abstracts before calibration was facilitated by discussion. The next step of screening included assessing the studies for eligibility based on the defined inclusion criteria.

Figure 1.

Article selection process.¹⁷

Additionally, the 12 included studies were critically appraised to assess their trustworthiness, relevance and results using checklists for qualitative research and systematic reviews and research by the Joanna Briggs Institute.²¹ All 12 studies were included for synthesis.

Step 7: Data extraction, charting and synthesis

In Table 1, the included studies are described with respect to the authors, year of publication, aim, design, setting, participants and results. A thematic analysis was conducted that was inspired by Braun and Clarke.²² After reading the results in all included studies in detail, the first, second, third and last authors independently identified features in the data relevant to the aim of the current scoping review. Agreements and disagreements were discussed before patterns of the data were grouped into codes. Subsequently, the first, second, third and last authors clustered the different codes into potential themes before jointly reviewing the themes to ensure that 1) the codes in each theme were coherent and 2) the codes in different themes could be clearly distinguished. Finally, the themes were defined and named by the first and last authors.

Table 1.

Characteristics of the included studies.

Author (year)	Aim	Design	Setting	Participants	Results
Babler and Strickland (2015)²³	To gain a greater understanding of adolescents’ experiences living with diabetes	Qualitative design, semi-structured individual interviews. No funders.	USA	Eight girls and three boys who had T1DM for at least six months agreed to participate in the study. The adolescents were aged 11–15 years.	The adolescents experienced needing to balance blood sugar and prevent crisis, integrate diabetes into the world outside the home, and advance in the journey towards independence.
Babler and Strickland (2016)²⁷	To gain understanding of adolescents’ experiences living with diabetes	Qualitative design, semi-structured interviews. No funders.	USA	Eight girls and three boys who had T1DM for at least six months agreed to participate in the study. The adolescents were aged 11–15 years.	The findings described how adolescents navigated the normalizing task of accepting a new life living with T1DM. Their descriptions include the following codes: accepting diabetes, believing it is possible to manage diabetes, taking responsibility and staying on track.
Commissariat et al. (2016)²⁸	To explore the incorporation of T1DM into self-identity among adolescents	Qualitative design, semi-structured individual interviews. Funded by grants from the National Institutes of Health in Sweden.	Sweden	Nineteen girls and 21 boys who had T1DM for at least one year agreed to participate. The adolescents were aged 14–18 years.	The adolescents described how T1DM made them feel less “normal” and how the illness was a significant burden in their daily lives. Adolescents described both positive and negative aspects of self-management in social relationships.
Ellis and Jayarajah (2016)³⁴	To explore the views of adolescents living with T1DM and to analyse its effects on their lives	Literature review, with keywords: Adolescence* OR teen OR young OR Youth And view* OR Opinion* OR Perspective* Or experience* OR Perception* And Diabet* Or Type 1 OR TIDM OR TID, with inclusion criteria: Adolescents aged 13–17 years, qualitative studies, peer-reviewed articles. No funders.	England	Eight studies from the UK, Australian, Sweden, the USA and Iran published between 2004–2014 were included.	The literature review described which psychological impact the adolescents experience living with T1DM and their concerns regarding management and knowledge of T1DM.
Ersig et al. (2016)³¹ Früh et al. (2021)²⁴	To identify stressors of teens with T1DM related to the impending transition to adulthood To gain knowledge about young people's experiences in their everyday lives and quality of life after receiving the diagnosis of T1DM	Qualitative design, semi-structured individual telephone interviews. No funders. Qualitative design, three individual interviews with each adolescent. No funders.	USA Norway	Eleven girls and four boys. The adolescents were aged 12–18 years. Four boys and four girls who had T1DM for at least two years agreed to participate together with their parents. The adolescents were aged 13–18 years.	The adolescents expressed concerns about challenges with self-management living with T1DM, such as hypoglycaemia and potential complications. Teens expressed the importance of receiving support and feedback from their parents. The adolescents reported a challenging relationship with their parents and their own role. They described experiences about how the outside world affected their self-image. The adolescents described how the disease impacted their daily lives and quality of life.
Gürkan and Bahar (2020)³³	To determine the perceived barriers to home care in adolescents with T1DM	Qualitative design, semi-structured individual interviews. No funders.	Turkey	Ten boys and 8 girls who had T1DM for at least one year agreed to participate in the study. The adolescents were aged 11–17 years.	The adolescents identified different barriers that affected their ability to manage their disease effectively. The barriers identified included school, friends, family, fear of complications, lack of information, and personal characteristics, among others.
Holmström and Söderberg (2021)²⁶	To explore and elucidate the lived experiences of young people living with T1DM in terms of their everyday lives and school in Sweden	Qualitative design, semi-structured individual interviews. No funders.	Sweden	Seven girls and three boys who had T1DM for at least one year agreed to participate. The adolescents were aged 13–18 years.	The adolescents felt that their everyday lives were ruled by T1DM and that the troublesome illness was never going to disappear. T1DM also affected them emotionally, and it was important to be met with understanding and support.
Husted et al. (2014)²⁹	To explore and illustrate how the guided self-determination youth method influences the development of life skills in adolescents with T1DM supported by their parents and healthcare providers	Qualitative design, semi-structured individual interviews. Grants from the Research Foundation at Hilleroed Hospital, Novo Nordisk Foundation, the Lundbeck Foundation, the Sahva Foundation, the Tryg Foundation, the Foundation of Lieutenant Commander H. Jensen and Wife, the Paediatric Department at Hilleroed Hospital, the Research Foundation of the Capital Region of Denmark, the Foundations of L. B. Lund, the Foundation of V. Heise, the Foundation of Cabinetmaker S. Jacobsen and Wife, the Health Insurance Foundation and the Beckett Foundation.	Denmark	Seven adolescents, (four girls, three boys) diagnosed with T1DM for more than one year. The adolescents were aged 13–18 years.	The adolescents described personal growth through person-specific follow-up by the healthcare professionals. Receiving support from healthcare professionals and their parents helped them becoming decision makers in their own lives with T1DM.
Ladd et al. (2022)³²	To describe the experiences and perceptions of adolescents with T1DM during the peri-transfer process to understand the factors needing improvement during the transition period	Qualitative design, semi-structured individual interviews. No funders	Canada	Sixty-one individuals (aged 17 years) who had T1DM for a minimum one year agreed to participate (22 boys and 39 girls).	The adolescents described navigating coping while living with T1DM from adolescence to emerging adulthood. The findings in this study identified changes and challenges related to collaboration and support between adolescents, parents and healthcare professionals.
Spencer et al. (2014)²⁵	To explore adolescents’ and parents’ experiences of living with T1DM from an interpretive phenomenological perspective	Qualitative design, individual interviews. Funded by a PhD studentship award from the University of Liverpool.	England	Twenty individuals (9 boys, 11 girls) agreed to participate in the study describing their experiences living with T1DM as teenagers. The adolescents were aged 13–16 years.	Experiential learning was key to adolescents` development of self-management, skills and independence. Parents and healthcare professionals were important for how the adolescents learned through trial and error. They also provided necessary support and feedback.
Strand et al. (2019)³⁰	To describe how adolescents perceive the transition from being dependent on their parents to managing their T1DM	Qualitative design, semi-structured individual interviews. Funded by the Norwegian Nurses Organization, and from the Central Norway Regional Health Authority, More and Romsdal Hospital Trust	Norway	Eleven girls and seven boys who had T1DM for at least two years agreed to participate. The adolescents were aged 16–18 years.	Taking responsibility for one's own diabetes was a process that developed over time with support from both family and health professionals.

Results

The included studies were conducted in the United States (n = 3), England (n = 2), Sweden (n = 2), Norway (n = 2), Denmark (n = 1), Turkey (n = 1) and Canada (n = 1). Based on the included studies, the results were synthesised into four main themes: acknowledgement of living with a chronic disease; adolescents’ emotional experiences living with T1DM; the importance of receiving support; and adolescents’ desire to achieve independence when living with T1DM.

Acknowledgement of living with a chronic disease

In several of the included studies, the adolescents described how living with T1DM disrupted their lives because they always needed to monitor their plasma glucose. Additionally, they reported that it was demanding to assess and calculate carbohydrates and determine how much insulin they needed to inject in relation to meals and physical activity.^23–28,30 However, adolescents in Babler and Strickland,²⁷ Ersig et al.³¹ and Ladd et al.³³ emphasised better self-management over time when living with T1DM.

The adolescents also described how the diabetes controlled their daily life and daily activities,^{23–25,27,30,31} and forced them to plan their everyday life carefully. Nevertheless, they understood the importance of following the treatment and routines to keep themselves healthy.^{23–25,29–31} The adolescents’ acceptance of living with T1DM was described as important to reduce their negative associations related to coping with a chronic disease.^{23,24,27–30,33}

Adolescents’ emotional experiences living with T1DM

Some of the adolescents experienced negative emotions, such as irritation and sadness, with regard to living with T1DM.^{23–30,32–34} The adolescents also described a feeling of being different from their peers.^{23–26,28–30,33} They were embarrassed by the diagnosis and tried to hide their medically necessary tools and to hide when measuring their plasma glucose or injecting insulin. Adolescents living with T1DM also felt it was unfair that their friends never needed to pay attention to the consequences of living with T1DM.^{23–26,28,30,33} The adolescents in Babler and Strickland,²³ Gürkan and Bahar,³³ Spencer, Cooper and Milton,²⁵ and Strand et al.³⁰ described irritation when T1DM caused problems participating in activities with friends, such as when they needed to interrupt physical activities to measure their plasma glucose or eat because of hypoglycaemia. Fear and anxiety about hypoglycaemia and complications were described in several studies.^25,30,31 Some adolescents did not dare to exercise or feel uncomfortable because of the fear of hypoglycaemia, which prevented them from participating in social settings.^{23–26,30,33} After coping with personal challenges such as overcoming the fear of hypoglycaemia and being unlike their friends, they felt more independent and comfortable. Overcoming these obstacles also made the adolescents feel hope for the future, and they then described T1DM as less of a burden.^{23,24,27–30}

The importance of receiving support

Parental support for better and worse. Parents were described as the most important supporters by adolescents living with T1DM. Receiving support from parents was expressed as a positive and necessary factor that contributed to feeling safe and gave adolescents self-confidence.^{23–26,28–34} Adolescents with T1DM also described how they sometimes perceived too much interference from their parents, especially when their parents asked about and took control of the administration of their treatment. Because of conflicts between adolescents and their parents, some adolescents said they tried to hide poor handling of their diabetes, which could lead to worry by their parents or quarrelling and guilt. Excessive involvement by their parents was described as decreasing the adolescents’ motivation to take care of themselves.^{23–25,32–34} Although reminders from parents were described as annoying, the adolescents admitted that they both needed and appreciated their parents’ support to cope with their T1DM treatment.^{24,25,29,30,32–34}

The importance of receiving support from friends. Adolescents’ desire for socialisation, peer acceptance and normality were highlighted by Babler and Strickland,²⁷ and Ellis and Jajarajah.³⁴ In addition, adolescents with T1DM described how they often tried to hide their illness from friends and people around them because they were afraid of eliciting negative reactions. Nevertheless, they received both support and understanding when the adolescents were openminded about their T1DM. The adolescents also expressed how friends supported and helped them in cases of hypoglycaemia when the friends were informed.^{23–25,28,31,33} The adolescents in Commissariat et al.²⁸ and Gürkan and Bahar³³ emphasised discomfort when friends asked too many questions or acted overprotectively. Like-minded peers helped the adolescents feel understood and equal because friends and family could not understand all aspects and obstacles of living with T1DM.^24,27,28 Nevertheless, the adolescents in Babler and Strickland²⁷ said they struggled to cope with their everyday life if their family and friends were not supportive.

Diabetes specialist nurses (DSNs) are an important source of support for adolescents with T1DM. Receiving regular support and advice from DSNs was described to strengthen adolescents’ self-confidence in T1DM. It felt reassuring and motivating to have regular conversations with DSNs.^24,26,29,32 Nevertheless, some of the adolescents reported that DSNs mostly spoke to their parents during the consultations, which made the adolescents feel overlooked.³⁰

Some of the adolescents in Gürkan and Bahar³³ and Ladd et al.³² expressed that the information they received from DSNs did not fit into teenage life. Adolescents living with T1DM lacked information about sexuality, use of alcohol and partying.³³ In comparison, Husted et al.²⁹ identified the importance of more person-specific follow-up by DSNs to motivate adolescents to increase their responsibility.

Adolescents’ desire to achieve independence when living with T1DM

The adolescents with T1DM expressed a desire to become more independent through more freedom from their parents and increased control over their own lives.^{23,25–30,32,34} The adolescents also noted that making some mistakes is an important part of becoming independent.^23,30 Establishing a belief in adolescents’ ability to cope with T1DM was also described as important in the transition to an independent life.²⁷ Showing both their parents and healthcare professionals that they were able to regulate their plasma glucose led adolescents to have better control and fewer restrictions. In addition, good routines allowed adolescents to participate in regular teenage activities.^{23,25,26,30,31}

Discussion

The aim of this scoping review was to explore adolescents’ experiences of T1DM. This scoping review identified and included 12 studies that provided data relevant to the aim. Four main themes were identified: acknowledgement of living with a chronic disease; adolescents’ emotional experiences of living with T1DM; the importance of receiving support; and adolescents’ desires to achieve independent living with T1DM.

This scoping review shows that adolescents found it difficult, confusing and frightening to live with T1DM. These results are strengthened by previous reviews, which show that feeling insecure is a well-known issue among adolescents living with T1DM.^7,8 The results of this scoping review also show how some adolescents experience a fear of dying, which is relevant to acute and long-term complications because of insulin treatment.^7,8 Another result of this scoping review is the finding that adolescents especially feared the acute complication of hypoglycaemia. Persistent fear and anxiety accompany increased stress levels, which in turn can lead to diabetes that is more unstable and difficult to control.¹³ Therefore, it is important that adolescents receive polyclinic follow-ups by DSNs. Specialised diabetic competence and skills are crucial to support adolescents living with T1DM in coping with challenges in their lives.

This scoping review also shows that most adolescents living with T1DM felt a sense of being different from their peers. Therefore, they sometimes preferred social withdrawal instead of being with friends who could observe, for example, hypoglycaemia situations. Loneliness can be very stressful for young people. Both temporary and persistent loneliness are associated with an increased risk of impaired mental health, self-harm and unhealthy lifestyle choices.³⁵ Bonell et al.¹² described adolescence as characterised by the search for belonging and confirmation from peers. Adolescents are constantly worried about being looked down upon or discriminated against for various factors that make them seem like they are not “normal.” Symptoms of hypoglycaemia, monitoring of plasma glucose, and administration of insulin make it difficult for adolescents with T1DM to hide that they are living with a chronic disease. This may influence the adolescents’ stress level, which increases body metabolism.³⁶ Therefore, DSNs need to focus on how stress may affect adolescents’ plasma glucose. Participating in groups together with like-minded adolescents with T1DM is another intervention that may reduce their feelings of loneliness.

In this scoping review, adolescents with T1DM often had recurrent negative emotions, such as shame, irritation and sadness. Since the findings of Garey et al.³⁷ and Hagger et al.³⁸ indicate that the incidence of depressive symptoms is significantly higher among adolescents with T1DM than the general population, DSNs need to focus on adolescents’ emotions to prevent depression. Living with T1DM governs adolescents’ everyday lives due to a high number of treatment choices and routines as well as the constant regulation of their plasma glucose.³⁸ The quality of medical and insulin treatment has increased, and opportunities to both prevent and treat complications have been significantly improved.³⁹ The use of insulin pumps and plasma glucose sensors⁵ improves adolescents’ control of their plasma glucose, which can reduce adolescents’ concern regarding both hypo- and hyperglycaemia. Additionally, the use of insulin pumps and plasma glucose monitoring may help adolescents be more impulsive than other adolescents. Despite the increased quality of diabetic medical treatment in recent decades, Castellanos et al.¹¹ and Everett and Wisk⁵ identified an association between lower socioeconomic status and a higher risk of diabetic ketoacidosis and diabetes-related complications. Notably, different funding levels in various countries’ health systems influence the ability of adolescents with T1DM to use diabetes technology because of a lack of money. The use of diabetes technology is associated with fewer adverse clinical outcomes.⁵

The results of this scoping review show that adolescents achieved a feeling of coping and reduced negative emotions when they managed to regulate their plasma glucose. According to Edraki et al.,⁴⁰ coping associated with good control of the disease allows individuals to reduce unpleasant emotions such as anxiety, fear, sadness and guilt as well as to maintain self-esteem, promote hope, maintain relationships with others and improve or maintain feelings of well-being. Therefore, it is essential for DSNs to guide adolescents with T1DM in different coping strategies.

T1DM affects not only adolescents but also the entire family. Since T1DM is a complex disease, especially for adolescents, parents are often worried and want to observe and participate in medical treatment. The results of this scoping review show that adolescents sometimes experienced too much interference and overprotection from their parents, which could lead to conflicts. On the other hand, parents with low socioeconomic status may have challenges in protecting or supporting their adolescents with T1DM. Parents, family and friends should be well informed and trained⁴¹ by a specialised diabetic nurse to be resources to support adolescents with T1DM.

The results of this scoping review show that adolescents felt that health professionals communicated with their parents instead of communicating with and focusing on the adolescent during consultations; thus, they felt overlooked and underestimated. If adolescents do not feel respected by the DSNs who impart knowledge or information, it will affect their ability to absorb what has been said.⁴² Adolescents should be encouraged to consult with health professionals without their parents; parents could join the consultation towards the end, and topics could be raised with the adolescent's permission. Alternatively, adolescents could bring a friend as support during the consultation instead of a parent. If the young person is aged under 16 years, the information is usually required to be provided in collaboration with the parents in a way that is adapted to the adolescent's age and development. In this scoping review, the adolescents were aged 11–18 years. Notably, there is quite a large difference in communicating with an 11-year-old child and communicating with an adolescent aged close to 18 years. The results of this scoping review show that adolescents living with T1DM lacked information relevant for their age group, such as information about sex and alcohol. Adolescence is often characterised by exploratory behaviour related to the consumption of alcohol, which leads to a decrease in plasma glucose and reduced ability to counter-regulate hypoglycaemia.⁴³ It is very important that adolescents with T1DM receive information about how alcohol affects plasma glucose and that they learn how to avoid hypoglycaemia when drinking alcohol. DSNs must therefore consider the patients’ age to ensure that the information provided is understandable and adapted to their individual needs. The information provided should also help the patient make an autonomous and well-founded choice.⁴²

Regarding adolescents’ desire to become more independent, independence gives a feeling of self-confidence, which strengthens individuals’ coping and sense of control over their life.⁴⁴ Independence depends on, among other things, socioeconomic status, parents’ willingness to relinquish control, adolescents’ sufficient competence to perform T1DM-related tasks effectively and emotional maturity. Maturity is necessary to cope with and understand the complexity and unpredictability of T1DM, including managing failure in treatment and prioritising self-care over more attractive activities.⁷ However, it is not easy for parents to judge how much independence and responsibility adolescents with T1DM should have in coping with their daily lives. Boundaries must be balanced by involving adolescents.⁴⁴ Overly strict boundaries and excessive control by parents will lead adolescents with T1DM to either become too passive or resist On the other hand, overly loose boundaries may lead adolescents to feel that no one is taking care of them.⁴⁴ Balanced boundary setting by parents is important to provide a safer framework and an opportunity for the development of independence and responsibility for adolescents living with T1DM, which is important for long-term coping with this chronic disease.

Methodological strengths and limitations

The use of the PRISMA ScR checklist¹⁶ strengthens the trustworthiness of the methodological performance in this scoping review. The database searches in this scoping review resulted in the inclusion of 12 studies, which limits the generalisability of the results and strengths of the conclusions. Although the searches were covered in databases believed to be relevant, it cannot be guaranteed that all relevant existing research in the area was included. However, an experienced librarian repeated the comprehensive search process to ensure quality in the database searches.

The included studies were from different journals and different countries. It may be a threat to the external validity of the scoping review if the results are transferred to a general context.¹⁵ In this study, possible cultural and healthcare service differences were not addressed, which could be a limitation.

Data syntheses are always influenced by the authors’ preconceptions. Therefore, all the researchers discussed the synthesised text to reduce any bias due to prior knowledge on the research topic. The similarities and differences between the themes were also assessed in these discussions to strengthen the credibility and reliability of the scoping review.^17,19

Conclusion

The aim of this scoping review was to explore adolescents’ experiences of living with T1DM. The results of the scoping review show that adolescents living with T1DM experience challenges that affect them both physically and mentally. Adolescents living with T1DM must handle a demanding diagnosis at the same time that they are growing up and seeking independence from their parents. This scoping review identified family, friends and health professionals as important for supporting adolescents living with T1DM. Their support can make adolescents feel safer on their pathway to developing autonomy and independence, although it can also be perceived as a hassle and lead to conflicts.

Medical and technological developments related to T1DM treatment are reassuring, and there is still no cure for T1DM. Because socioeconomic status plays a role in adolescents’ use of diabetes technology, it is important to influence policy changes in countries with coverage-related barriers to optimal diabetes care. Supporting adolescents living with T1DM is therefore very important. Support based on adolescents’ individual needs and wishes can strengthen their diabetes outcome, lead to coping and prevent both acute and long-term complications. It is also important for further research and DSNs to address medical treatment and to consider the psychological aspects of living with T1DM that can affect adolescents’ self-identity and self-confidence.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Trude F. Eines

Appendix

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