Self-care needs and obstacles of adolescents with type 1 diabetes: a narrative review

Abstract

Introduction

Type 1 diabetes is the most common metabolic disorder in children. This disease is associated with a range of potential complications, including developmental and endocrine abnormalities, acute events such as diabetic ketoacidosis, as well as long-term microvascular and macrovascular complications. Effective self-management is considered the cornerstone in controlling this chronic condition. The responsibility for self-care may be assigned to adolescents who have not yet fully accepted their diagnosis, which can negatively impact their adherence to self-care practices. Therefore, the purpose of this narrative review study is to identify the self-care needs of adolescents living with T1D based on the review and analysis of the findings of previous studies.

Methods

This study is a narrative review. The population of interest includes all studies published between 2013 and 2024 addressing the self-care needs and glycemic control issues of adolescents living with T1D. Relevant articles were retrieved from the databases PubMed, ScienceDirect, Scopus, and Web of Science and The keywords “self-care,” “self-care needs,” “type 1 diabetes,” “blood glucose control,” and “adolescents” were used with MeSH terms in combination within the titles, abstracts, and keyword sections. In the first stage of the search, a total of 7973 articles were found. After removing similar and unrelated articles based on the inclusion and exclusion criteria, 15 articles remained for review. In the analysis phase, the findings extracted from each article were recorded and, based on their content, concepts related to self-care in adolescents living with T1D were extracted. These concepts were classified into two main areas: “self-care needs” and “self-care barriers.”

Results

The study results were generally categorized into two groups: self-care needs in diabetes and barriers to self-care in diabetes. The most significant self-care needs identified included dietary management, physical activity and exercise, recognition of blood glucose emergencies and appropriate responses, acquisition of knowledge about insulin, family support for adolescents, the development of independence from parents, peer support, the necessity of disease-related education, support from healthcare professionals, and attention to spiritual needs.Barriers to self-care included concealing the disease from friends, insufficient education, fear of needles, treatment costs, lack of resources, issues with teachers, denial of the disease, and conflicts with parents.

Conclusion

A review of the research findings reveals an urgent need for self-care activities across multiple areas to reduce the burden of diabetes-related disease. Also, physicians play an important role and bear responsibility in facilitating and promoting self-care. Barriers to self-care are factors that hinder adolescents or parents from accessing, receiving, and utilizing comprehensive, patient-centered, coordinated, accessible, and high-quality care.

Introduction

Type 1 diabetes is the most common metabolic disease in children, characterized by the destruction of beta cells in the islets of Langerhans in the pancreas [1, 2]. The exact cause of pancreatic beta cell destruction remains unknown; however, genetic and environmental factors are believed to contribute [3]. Each year, approximately 80,000 children worldwide are diagnosed with type 1 diabetes [4]. In Iran, it is estimated that there are between 5 and 7 million individuals with diabetes, of whom more than 50,000 are children and adolescents [5]. Adolescence is the phase of life between childhood and adulthood, from ages 10 to 19. It is a unique stage of human development and an important time for laying the foundations of good health [6]. Diabetes mellitus is associated with various potential complications, including growth and endocrine disorders, acute complications such as diabetic ketoacidosis and hypoglycemia, as well as microvascular and macrovascular complications [2]. Insulin therapy remains the cornerstone of management for type 1 diabetes [7]. Complications related to insulin injection include systemic allergic reactions, lipodystrophy, insulin resistance, and morning hyperglycemia. Proper glycemic control reduces the incidence and delays the onset of these complications, while also improving patients’ quality of life [8]. The most important factor in managing this chronic disease is effective self-care [9]. Self-care is a central concern in nursing. The community-based nursing approach has established that, in addition to healthcare professionals being responsible for patient care, individuals with chronic diseases also bear responsibility for managing their own care [10]. Self-care is defined by the World Health Organization as “the ability of individuals, families, and communities to maintain and promote health, prevent disease, and cope with illness and disability, with or without the support of a healthcare provider” [11, 12]. In pediatric diseases, the concept of self-care encompasses three dimensions: psychosocial well-being, general health, and responses to disease-related challenges. More specifically, self-care refers to the range of behaviors individuals engage in to promote and restore their health [13]. While younger children are entirely dependent on family members, during puberty and adolescence, they tend to assume responsibility for their own care. However, research indicates that despite technological advancements in diabetes management, adherence to treatment and disease control remain suboptimal during adolescence [5, 11]. During adolescence, factors such as dependence on peer groups, engagement in social activities, fear of being perceived as different, the development of personal identity, and increasing independence from parents can contribute to poor participation in self-care activities among adolescents [14, 15]. Self-care is one of the most fundamental strategies for managing and preventing complications of diabetes, leading to improved quality of life, increased lifespan, and reduced healthcare costs [8]. Effective self-care in type 1 diabetes requires a balanced integration of insulin therapy, diet, and exercise, which is facilitated by frequent blood glucose monitoring [16]. However, the responsibility for self-care may be assigned to adolescents who have not fully accepted their illness, which can negatively affect their adherence to self-care. Effective self-care implementation in chronic diseases requires patients to be aware of their needs in daily life. In collaboration with healthcare professionals, patients utilize their knowledge and skills to identify problems and needs, apply optimal treatment strategies, maintain healthy behaviors, and ultimately meet their care requirements [17, 18]. Therefore, the purpose of this narrative review study is to identify the self-care needs of adolescents with type 1 diabetes based on the review and analysis of the findings of previous studies. Addressing these needs will help adolescents adopt more appropriate self-care behaviors and take steps to reduce the complications associated with the disease.

Methods

The process of searching, screening and selecting studies

The accuracy and transparency of this review study was reviewed and confirmed with the help of the SANRA checklist and under the supervision of the research team members. The study population comprised all published articles on self-care needs and blood glucose control among adolescents with type 1 diabetes between 2013 and 2024. A search for articles was conducted in the databases Pubmed, Science Direct, Scopus, and Web of Science, and the keywords self care, self care needs, diabetes type 1, Blood Glucose Control, and Adolescent were used with Mesh combinations and with Boolean operators AND and OR in the title, abstract, and keywords. In all databases, the advanced article search method was used. In the initial search phase, a total of 7,973 articles were retrieved. Following the removal of duplicates between databases, this number was reduced to 7,433. Inclusion criteria were as follows: [1] studies involving adolescents (aged 10–19 years) with type 1 diabetes; [2] articles addressing diabetes self-care, self-care needs in diabetes, or blood glucose control; [3] publications in reputable journals; [4] English-language articles; and [5] availability of full texts. Exclusion criteria were: [1] systematic reviews and meta-analyses; [2] conference proceedings and theses; [3] studies not reporting results separately for adolescents; and [4] studies without a specific focus on self-care and related needs. Article selection proceeded in multiple stages. Initially, titles were screened against inclusion and exclusion criteria, eliminating irrelevant studies and retaining 525 articles. Subsequently, abstracts were evaluated against the criteria, excluding unrelated articles and retaining 47 studies. Full texts were then thoroughly reviewed, excluding articles lacking full-text access or separate adolescent results, resulting in 15 included studies. The flowchart of study inclusion in this review is presented in Fig. 1. The results from the included studies were summarized in Table 1 according to the research objectives and subsequently analyzed. In the analysis phase, the findings extracted from each article were recorded and, based on their content, concepts related to self-care in adolescents with type 1 diabetes were extracted. These concepts were categorized into two main areas: “self-care needs” and “self-care barriers,” and each subarea was arranged from highest to lowest frequency based on the frequency of repetition in studies to identify the most important needs and barriers to self-care in this age group.

Fig. 1.

Flowchart for including studies in the literature review

Table 1.

Summary of study results

Row	Article title and year of publication	First author	Type of study	Participants	Results
1	The lived experiences of young people (13–16 years) with Type 1 diabetes mellitus and their parents – a qualitative phenomenological study (2013) [15]	J. E. Spencer	Qualitative phenomenology	Adolescents aged 13 to 16 (20) and their parents (27) and a total of 47 participants	The experience of living with type 1 diabetes has three stages: adapting to the diagnosis, learning to live with diabetes, and gaining independence. Barriers to self-management of adolescent diabetes include parental reminders to perform management tasks, inconsistent information from healthcare professionals, training that lacks real-life applicability, and concealing the disease from peers. The self-management needs of adolescent diabetes include adaptation of both parents and adolescents to the diagnosis, positive relationships between healthcare team members and families for effective education, learning through adolescents’ own experiences and mistakes, and support from peers. Adolescent independence from parents can act as either a positive or negative factor in diabetes self-management
2	Adolescents, Parents and Physicians: A Comparison of Perspectives on Type 1 Diabetes Self-Care (2013) [16]	Dianne K. Palladino	Quantitative Cross sectional	Adolescents aged 13 to 16 years and their parents (48) and pediatric endocrinologists (21) and a total of 69 participants	The most common barriers to diabetes self-care in adolescents include distraction or preoccupation, food cravings, hunger, temptation from others to neglect self-care, forgetfulness, and physical illness.The most common barriers to diabetes self-care in adolescents include distraction or preoccupation, food cravings, hunger, temptation from others to neglect self-care, forgetfulness, and physical illness.The most common barriers to diabetes self-care in adolescents include distraction or preoccupation, food cravings, hunger, temptation from others to neglect self-care, forgetfulness, and physical illness. Self-care needs in adolescents with diabetes include: the adolescent’s sense of responsibility for insulin injection and dietary adherence, encouragement of others to perform self-care activities correctly, maintaining physical activity, and engaging in athletic pursuits
3	Development and validation of PRISM: A survey tool to identify diabetes self-management barriers (2014) [17]	Elizabeth D. Cox	Cross-sectional-quantitative	Adolescents 13 to 17 years old and their parents, parents of children 8–12 years old (425 people in total)	Barriers to diabetes self-management from the perspectives of adolescents, parents of adolescents, and parents of children include understanding and organizing care, pain and difficulty with diet, denial of illness, interactions with the healthcare team, family interactions, and interactions with peers. More broadly, barriers to adolescent diabetes self-management include lack of organization of self-care activities, difficulty in adhering to a diet, failure to fully accept the disease and its consequences, receiving insufficient information from the healthcare team, and hiding the disease from peers. The needs for self-management of adolescent diabetes include age-appropriate behavior from the healthcare team, effective verbal communication skills between the treatment team and the adolescent, family support, and understanding of the disease from peers. Importantly, unlike parents, denial of the disease does not hinder self-management in adolescents
4	Prevalence of and Disparities in Barriers to Care Experienced by Youth with Type 1 Diabetes (2014) [18]	Jessica M. Valenzuela	Cross-sectional	People under 20 years’ old (780)	The most common barriers to diabetes self-care were cost of care, communication difficulties with healthcare providers, and obtaining necessary information. Barriers to diabetes self-care that contribute to poor blood glucose control include difficulty accessing care, lack of a regular healthcare provider, low family income, low parental education, having private insurance, and being black, non-Hispanic
5	Normalizing Adolescent Experiences Living With Type 1 Diabetes (2015) [19]	Elizabeth Babler	Qualitative (Classical grounded theory)	Adolescents 11 to 15 years old (11)	Diabetes self-care needs in adolescents include: 1.remembering the beginning of the journey, which involves recalling the diagnosis, learning about diabetes and its management, and recognizing that life is changing. 2.Preventing blood glucose crises in adolescents with diabetes includes the ability to recognize symptoms of hypoglycemia and hyperglycemia, monitor blood glucose levels, learn necessary actions during blood glucose crises, adhere to diet and exercise regimens for blood glucose management, review the outcomes of these efforts, and understand the consequences of blood glucose imbalances. 3. Integrating diabetes with the outside environment (gaining independence from parents and realizing that I am different from others) 4. Moving towards independence involves taking charge of self-care, experiencing conflicts with parents, and understanding the challenges of managing diabetes. 5. Adaptation to the disease involves self-confidence in the possibility of self-management, adherence to the correct path, and showing responsibility. 6. Helping others (guiding others, expressing compassion to establish connections, and planning to help others. Barriers to diabetes self-care in adolescents include fear of needles, pain from blood glucose monitoring, conflicts with parents, feelings of embarrassment and reluctance to manage their care in front of others, and adolescent laziness
6	Helping Adolescents with Type 1 Diabetes “Figure It Out” (2015) [20]	Elizabeth Babler	Qualitative	Adolescents 11 to 15 years old (11)	Barriers to diabetes self-management include blame and criticism from parents or doctors, lack of support from others, parents’ fear of the teenager’s high blood glucose, denial of the disease, and fear of needles. The self-management needs of diabetes in adolescents include coming to terms with the disease, understanding that diabetes is permanent, feeling trapped, recognizing the need to make life changes, learning to cope with the disease, accepting new normal conditions, understanding that diabetes is not scary, talking to a friend with diabetes, believing that the disease can be managed, changing attitudes, knowing how to take appropriate actions, prioritizing diabetes, accepting adolescent responsibility, receiving parental support, setting goals, recognizing high and low blood glucose, encouraging oneself, learning correct insulin dosing and carbohydrate counting, staying active, and receiving performance praise from parents and doctors. Having successful role models in diabetes management leads to better disease acceptance among adolescents
7	Living with type 1 diabetes is challenging for Zambian adolescents: qualitative data on stress, coping with stress and quality of care and life (2015) [21]	Given Hapunda	Qualitative	Adolescents aged 12 to 17 (10), their caregivers (8) and doctors (4) and a total of 22 participants	Barriers to diabetes self-care in adolescents include: non-adherence to self-care activities (such as not attending the clinic as scheduled, not changing the insulin injection site, taking the wrong insulin doses, and avoiding insulin), hiding the disease, not following a proper diet due to poor economic conditions, lack of medical supplies, belief in treating diabetes with medicinal herbs, lack of family support, language limitations for communication, lack of diabetes specialists, high insulin prices, poverty, poor socioeconomic conditions, emotional problems, cognitive problems, and lack of independence from caregivers
8	Adolescents’ perceptions of the transition process from parental management to self-management of type 1 diabetes (2018) [22]	Marianne Strand	Qualitative phenomenographic	Adolescents 16 to 18 years’ old (18)	Adolescent independence from parents can act as either a facilitator or a barrier to diabetes self-care. While increased independence boosts adolescents’ self-confidence, it can also lead to hiding the illness from friends, which may result in neglecting self-care activities. The biggest challenge on the path to independence was maintaining stable blood glucose levels throughout puberty. Among the self-care needs of adolescents with diabetes are the need to update information when facing new situations (such as regulating blood glucose when eating new foods and adjusting insulin doses during exercise) and the need to talk and empathize with friends
9	Factors Affecting Self-Care Performance in Adolescents with Type I Diabetes According to the PEN-3 Cultural Model (2018) [23]	Fazlollah Ghofranipour	Qualitative	Adolescents aged 14 to 19 (12), doctors (4), mothers of adolescents (8), fathers of adolescents (2) and a total of 26 participants	Barriers to diabetes self-care in adolescents included lack of knowledge about the disease and its causes, hiding the disease from friends and relatives, stigma, low adolescent self-confidence, low adolescent self-efficacy, inadequate education in public and private institutions, high cost of blood glucose test strips, fear of diabetes complications, parents’ lack of knowledge about how to interact with adolescents, traditional Iranian family lifestyles, and poor communication among patients with diabetes. Facilitators of diabetes self-care in adolescents included attention to patients’ spiritual needs, the use of traditional medicine alongside insulin therapy, and maternal support
10	Self-Care Among Type 1 Diabetes Mellitus Bearing People: Adolescents’ Experience (2019) [24]	Luciana Vládia Carvalhêdo Fragoso	Qualitative	Adolescents 12 to 18 years’ old (14)	Self-care needs of adolescents with diabetes include insulin adaptation (appropriate timing of insulin injections), management of blood glucose crises (awareness of symptoms of high and low blood glucose and understanding their differences), maintaining a healthy lifestyle (balanced diet with limited carbohydrate intake), financial stability, diabetes self-care education, monitoring of the adolescent’s self-care, and empathetic listening by healthcare professionals. Barriers to self-care for adolescents with diabetes include the pain of insulin injections, limited knowledge about managing blood glucose fluctuations, and temptations related to food
11	Living With Diabetes: Perceived Barriers of Adolescents (2019) [25]	Kübra Pınar GÜRKAN	Qualitative (phenomenological)	Adolescents 11 to 17 years’ old (18)	Barriers to diabetes self-management in adolescents include negative feelings about having diabetes (such as denial and concerns about self-image), personal barriers (including lack of knowledge, fear of complications, and individual characteristics), and environmental barriers involving family, friends, school, and healthcare providers
12	Experiences of Adolescents and Emerging Adults Living With Type 1 Diabetes (2019) [26]	Sarah Jaser	Qualitative	People aged 17 to 21 (11)	Biological, psychological, and environmental challenges were significant barriers affecting diabetes self-care. Biological barriers included hunger, food cravings, and fatigue; psychological barriers encompassed knowledge, affect (such as fear related to health status), cognition, motivation, and goal-setting; while environmental barriers involved factors related to school, peers, and competing priorities. Facilitators of adherence to diabetes self-management include self-deprecating humor, cognitive reframing, diabetes education, and support from the healthcare system
13	Self-management support of adolescents with type 1 Diabetes Mellitus in the light of healthcare management (2021) [27]	Annanda Fernandes Moura Bezerra Batista	Qualitative	Adolescents 10 to 19 years’ old (9)	The self-management needs of adolescents with diabetes include longitudinal monitoring by the healthcare team, empowerment of adolescents by their families for self-care, availability of necessary institutions for self-care, and the role of social networks in disease acceptance and quality of life. Facilitators of diabetes self-management include specialized outpatient medical services rather than primary health care, support from parents and other family members such as uncles and grandparents, anti-bullying classes at school, educational classes about diabetes in school, and having friends who themselves have diabetes. Barriers to diabetes self-management in adolescents include: gaps in communication between health professionals, adolescents, and families; lack of essential institutions for daily and uninterrupted use; lack of continuous provision of necessary institutions for diabetes self-management by the government; lack of necessary supplies such as pens and syringes; and especially insulin pumps
14	Knowledge of young people living with type 1 diabetes and their caregivers about its management (2022) [28]	Bernard Afriyie Owusu	Qualitative	Youth aged 14 to 24 (28) and caregivers (12) and healthcare providers (6) for a total of 46 participants.	The knowledge required for managing type 1 diabetes includes understanding self-monitoring of blood glucose levels; recognizing, treating, and measuring blood glucose during hypoglycemia and hyperglycemia until normalization; knowing dietary management and exercise principles, such as carbohydrate counting and appropriate types of physical activity; and managing diabetes effectively even in the presence of other health conditions
15	Barriers to diabetes self-management in primary care settings – Patient perspectives: Phenomenological design (2022) [29]	Sherry Oluchina	Qualitative Phenomenological	Adolescents 10 to 19 years’ old (40)	Barriers to diabetes self-management in adolescents included: (1) the dynamic and chronic nature of diabetes; (2) personal characteristics such as laziness, forgetfulness, and cravings for certain foods; (3) insufficient knowledge and skills about diabetes self-management, including lack of knowledge about a healthy diet and foot care, misconceptions about self-management methods, and inadequate skills in carbohydrate counting and insulin dose calculation; (4) lack of motivation due to factors like limited time, lack of school support, and scarce resources; and (5) emotional distress including social isolation and stigma, impaired self-image, self-blame for having diabetes, and fear of needles

Assessing the quality and methodological validity of the reviewed studies

To enhance the credibility of the findings and ensure the methodological rigor of the included studies, a quality assessment was performed as part of the final review process. Given the heterogeneity in study designs, appropriate appraisal tools were selected according to the type of each study. Specifically, the quality of cross-sectional studies was assessed using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist. This tool evaluates several methodological domains, including study inclusion and exclusion criteria, identification of potential confounding factors, the generalizability of the findings to the target population, and other relevant considerations [19]. The quality of studies with qualitative methodological designs was assessed using the validated Critical Appraisal Skills Program (CASP) tool, which consists of 10 items and evaluates the credibility, findings, and applicability of qualitative research [20]. The quality assessment process was conducted independently by two researchers, and any disagreements were resolved through discussion. Table 2 shows a summary of the results of the quality assessment of the reviewed literatures.

Table 2.

A summary of the quality assessment results of literatures

Row	Articles title	Article quality review tool	Result of article quality assessment
1	The lived experiences of young people (13–16 years) with Type 1 diabetes mellitus and their parents – a qualitative phenomenological study	CASP	Moderate methodological quality. Researcher reflexivity was largely absent, and transferability was only partially supported through basic contextual description, with no explicit discussion of applicability to other settings
2	Adolescents, Parents and Physicians: A Comparison of Perspectives on Type 1 Diabetes Self-Care	JBI	Good methodological quality. A well-designed quantitative cross-sectional study with clear inclusion criteria, valid measurement of exposures and outcomes, and appropriate statistical analyses. The main limitation relates to the cross-sectional design and limited population diversity
3	Development and validation of PRISM: A survey tool to identify diabetes self-management barriers	JBI	High methodological quality; low risk of bias. All JBI criteria for analytical cross-sectional studies were met
4	Prevalence of and Disparities in Barriers to Care Experienced by Youth with Type 1 Diabetes	JBI	High methodological quality. Appropriate design, validated measures, and robust multivariable analyses were used; causal inference is limited due to the cross-sectional design
5	Normalizing Adolescent Experiences Living With Type 1 Diabete	CASP	High methodological quality; moderate risk of bias Researcher reflection was not addressed and the transferability of findings to other settings or populations was not discussed, which somewhat limits the broader applicability of the results
6	Helping Adolescents with Type 1 Diabetes “Figure It Out”	CASP	High methodological quality; low risk of bias. The study met all CASP qualitative checklist criteria, including clear reflexivity and methodological transparency
7	Living with type 1 diabetes is challenging for Zambian adolescents: qualitative data on stress, coping with stress and quality of care and life	CASP	Good methodological quality; moderate risk of bias. researcher reflexivity was not addressed, and the transferability of findings to other settings or populations was not discussed, which somewhat limits the broader applicability of the results
8	Adolescents’ perceptions of the transition process from parental management to self-management of type 1 diabetes	CASP	High methodological quality; low risk of bias. All CASP criteria were fully met, including explicit reporting on researcher reflexivity
9	Factors Affecting Self-Care Performance in Adolescents with Type I Diabetes According to the PEN-3 Cultural Model	CASP	High methodological quality; low risk of bias. The study met most CASP criteria, with limited reporting of researcher reflexivity
10	Self-Care Among Type 1 Diabetes Mellitus Bearing People: Adolescents’ Experience	CASP	High methodological quality; moderate risk of bias. This qualitative study used an appropriate design with semi‑structured interviews and content analysis to explore adolescents’ self‑care experiences. The study setting, participant characteristics, data collection, analytic procedures, and ethical approval were clearly described, and findings were supported by participant quotations. Researcher reflexivity was not explicitly addressed, and transferability was not discussed, although sufficient contextual detail was provided to allow readers to judge applicability to similar settings
11	Living With Diabetes: Perceived Barriers of Adolescents	CASP	High methodological quality; low risk of bias. The study met most CASP qualitative criteria, including a clearly stated aim, appropriate qualitative design, purposive sampling, rigorous data collection through in-depth interviews and focus groups, systematic directed content analysis based on the PEN-3 model, and adequate ethical considerations. Researcher reflexivity was not explicitly discussed
12	Experiences of Adolescents and Emerging Adults Living With Type 1 Diabetes	CASP	High methodological quality; low risk of bias. The study met most CASP criteria; the main limitation was limited reporting of researcher reflexivity
13	Self-management support of adolescents with type 1 Diabetes Mellitus in the light of healthcare management	CASP	High methodological quality; low risk of bias. Researcher reflexivity was not explicitly discussed, representing a minor limitation. Transferability was considered through sufficient contextual and participant description, although broader applicability beyond similar settings was not extensively discussed
14	Knowledge of young people living with type 1 diabetes and their caregivers about its management	CASP	High methodological quality; low risk of bias. The only identified limitation was the lack of explicit reporting on researcher reflexivity
15	Barriers to diabetes self-management in primary care settings – Patient perspectives: Phenomenological design	CASP	High methodological quality; low risk of bias. All CASP criteria were fully met, including explicit reporting on researcher reflexivity

Results

All the reviewed articles were published in English. Regarding the research settings, the studies were conducted in various countries: one study each in the United Kingdom, Kenya, Ghana, Zambia, Iran, Turkey, and Norway; two studies in Brazil; and six studies in the United States of America. In terms of study design, 12 studies employed qualitative methodologies, while 3 studies were cross-sectional. The sample sizes ranged from 9 to 780 participants. The detailed findings of these studies are summarized individually in Table 1.

Overall, the methodological quality of the included studies was good to high, as assessed using the CASP qualitative checklist and the JBI analytical cross‑sectional tool. Most qualitative studies demonstrated clear aims, appropriate designs, rigorous data collection, and transparent analytic processes. However, researcher reflexivity and transferability were inconsistently reported, which may limit the interpretation of findings across different contexts. Quantitative studies assessed using JBI showed robust measurement and analytical approaches, with limitations primarily related to their cross‑sectional design. Overall, the quality of the evidence was sufficient to support synthesis of findings, while acknowledging these methodological constraints.

The findings of the present study fall into two main groups: self-care needs in diabetes and barriers to self-care in diabetes. Each of these groups will be described in detail.

Self-care needs in diabetes

Diabetes is a chronic disease that requires lifelong medical care and patient self-care. Evidence has shown that 98% of diabetes treatment depends on patient self-care behaviors, and patients with diabetes can reduce the risk of microvascular and macrovascular complications by using self-care [21]. Proper implementation of self-care in diabetes leads to proper blood glucose control and a significant reduction in the incidence of complications [22]. The concept of self-care in children was first coined in 1976. Children need to take charge of their own daily management of chronic conditions. Self-care refers to the behaviors that individuals engage in to restore or improve their health [13]. Based on a review of the studies reviewed, the most common self-care needs of adolescents with type 1 diabetes were: Diet management (reported in 7 literatures), physical activity and exercise (5 literatures), Diagnosis of blood glucose crises and necessary measures (5 literatures), Getting information about insulin (5 literatures), family support for the adolescent (4 literatures), becoming independent from parents (4 literatures), peer support (3 literatures), Need to receive education about the disease (3 literatures), support from medical staff (3 literatures), and attention to spiritual needs (2 literatures). These needs are arranged in order from the most frequent occurrence in the articles to the least frequent occurrence. In cases where frequencies were equal, the order of presentation was determined based on the conceptual importance and the degree of emphasis placed by participants in the contant of articles. According to the research results, it was found that adolescents need to update information about new foods and their knowledge about the nature of the exercises they should do is limited; therefore, intervention on these two needs could potentially have a significant impact on improving their self-care.

Diet management

Diet, nutrition, weight control, and increased physical activity are the cornerstones of diabetes treatment [23]. To calculate the amount of insulin needed, attention must be paid to food intake, especially the amount of carbohydrate. In insulin therapy, there is no fixed amount of carbohydrate intake and insulin intake [1]. Research results show that diet management is one of the most frequent self-care needs of adolescents with diabetes. Physicians, adolescents, and their parents believe that proper diet management is one of the most difficult self-care activities for adolescents with diabetes. In addition, according to physicians, adolescents have the least skill in the field of physical activity and exercise, while according to parents, adolescents have the least self-care skill related to following a proper diet [24]. One of the self-care needs of adolescents in this regard is the need to update information about new foods [25]. In accordance with the results of other studies, it can be said that food cravings are one of the reasons why it is difficult to adhere to a proper diet, which leads to a lack of blood glucose control by tempting to consume inappropriate foods [26]. Adolescents may find it difficult to adhere to a carbohydrate-restricted diet. They may resist these restrictions and may be unable to tolerate a healthy diet for long periods, which reduces their motivation for self-care [27]. Adolescents were aware of foods to avoid, however, their knowledge of proper diet to achieve adequate blood glucose control was limited; for example, most adolescents did not know how to count carbohydrates, which reduced their dietary flexibility [28, 29].

Physical activity and exercise

In type 1 diabetes, regular exercise is beneficial for better disease control and reduces the body’s demand for insulin. Exercise can reduce the risk of late complications of the disease, such as cardiovascular disease [30]. Regular exercise is essential for children and adolescents with diabetes because it can help improve blood glucose control [1]. According to research, the most common self-care skills among adolescents with diabetes are insulin injections and physical activity [24]. Staying active and exercising is one way to improve blood glucose control [28, 31]. Adolescents with diabetes had limited knowledge about the positive effects of exercise on blood glucose control and the nature of the exercises they should perform. Some adolescents reported that despite awareness of the benefits of exercise, they refrained from physical activity due to fear of injury [29]. For some adolescents, regular physical activity is a routine; for others, it requires time, guidance, patience, and support from family and healthcare professionals [26].

Diagnosis of blood glucose crises and necessary measures

Knowing the symptoms of low or high blood glucose and being able to differentiate these symptoms from each other is a crucial activity for adolescents with diabetes to manage their disease effectively [28, 31]. Another study has shown that adolescents’ knowledge is ambiguous when blood glucose fluctuations occur. For this reason, adolescents must be able to understand the difference between these two blood glucose crises so that they can take the necessary measures if either occurs [26]. Another study shows that even patients who adhere to diabetes self-care may still experience hypoglycemia or hyperglycemia, leading to frustration. Therefore, there is not a complete, direct relationship between adherence to self-care behaviors and optimal blood glucose control [32].

Getting information about insulin

Parents and adolescents considered conscientiousness about insulin injections and diet adherence as effective factors in self-care, while physicians did not share this view [24]. Adolescents also reported feeling guilty when they forgot to inject themselves with insulin [25]. Non-adherence to changing insulin injection sites, injecting the wrong dose, and avoiding insulin use are all factors that contribute to poor self-care in adolescent [28, 33]. Adapting to insulin therapy requires acquiring skills in self-injection and observing the appropriate timing of insulin injections [26].

Family support for adolescents

Family-centered self-care provides the support adolescents need and encourages family participation in self-care. The family motivates adolescents by monitoring and encouraging their activities. However, this support should be supervisory and not impede adolescent independence. Excessive family pressure can negatively impact self-care [27, 28]. Adolescence is a transitional period from childhood to adulthood during which diabetes management responsibilities should progressively transfer from parents to adolescents, enabling them to take charge of their own care. Families should empower adolescents and provide supportive supervision throughout this process. An important finding in one study is that support relatives, similar to parental support, can improve adolescent self-care activities, as relatives can provide essential assistance during crises [34].

Becoming independent from parents

Adolescents increasingly gain independence from their parents as they grow older. Their progressive participation in treatment and healthcare decisions enhances their self-confidence in managing their own care. Expectations from parents and healthcare professionals rise with age, anticipating greater adolescent independence. Adolescents perceive independence as essential for acquiring the necessary knowledge and skills for effective self-management [25]. Adolescents spend increasing amounts of time outside the home and away from their families during this period; thus, gaining independence in self-care skills is essential [31]. On the other hand, research indicates that lack of independence from parents is an obstacle to effective self-care [25, 31, 33]. At the same time, independence from parents can have destructive effects on self-care. It may provide adolescents with the opportunity to hide their illness from friends, leading them to skip blood sugar monitoring or insulin injections, which can result in blood sugar fluctuations [25, 35]. Similarly, it can be concluded that in some adolescents, independence is a requirement for self-care in illness, while in others, it may be considered an obstacle to self-care.

Peers support

Peer support effectively empowers adolescents to manage their diabetes independently from their families. While some adolescents feel comfortable injecting insulin in front of others, others may conceal their condition from peers. If peers lack support or diabetes-related knowledge, adolescents may avoid engaging in self-care activities with them. However, research shows that positive peer interaction and understanding can enhance adolescents’ self-care behaviors. In fact, some parents even rely on their children’s friends to assist and educate them about emergency procedures [27, 35]. Some research indicates that having friends with diabetes significantly impacts adolescents’ self-care. These peers can facilitate acceptance of the disease and assist each other in obtaining necessary supplies [34]. Talking to friends who have diabetes helps adolescents overcome denial of their condition and understand that diabetes is manageable and not frightening [28].

Need to receive education about the disease

The healthcare team plays a crucial role in facilitating self-care among adolescents by providing educational programs on diabetes and its management [32]. Additionally, schools can contribute to enhancing adolescents’ self-care by offering diabetes-related educational classes [34].

Support from medical staff

Constructive interaction with the healthcare team significantly improves adolescent self-care. Members of the healthcare team should interact with adolescents in an age-appropriate manner. Empathetic listening and effective verbal communication are essential skills to foster closer relationships between healthcare professionals and adolescents [26, 27]. Healthcare professionals can promote independence and self-efficacy in adolescents with diabetes through targeted diabetes education programs [34].

Attention to spiritual needs

Although medical staff often overlook patients’ spiritual needs, spirituality plays a significant role in the consistent self-care of adolescents; therefore, the spiritual needs of adolescents with diabetes should be considered by healthcare professionals [36]. This need for self-care is important as adolescents with diabetes face various stressors throughout their illness. One common coping mechanism is through prayer and seeking spiritual support [33].

Barriers to self-care in diabetes

Adolescence is a critical period, and the presence of a chronic illness during this time can undermine a patient’s sense of identity and independence, altering their future plans. These challenges complicate disease management during adolescence. Therefore, identifying the barriers faced by adolescents with type 1 diabetes is essential to help them develop the necessary skills for effective disease management [37].

Based on a review of the studies reviewed, the most common barriers to self-care for adolescents with type 1 diabetes were: hiding the illness from friends (reported in 7 literatures), Insufficient training (4 literatures), fear of needles (4 literatures), treatment cost (4 literatures), lack of resources (4 literatures), denial of illness (4 literatures), teachers (3 literatures), conflict with parents (3 literatures) and mental state (3 literatures). These barriers are listed in order from the most frequent occurrence in the articles to the least frequent occurrence. In cases where frequencies were equal, the order of presentation was determined based on the conceptual importance and the degree of emphasis placed by participants in the contant of literatures. According to the results of the studies, it was found that inadequate education causes the inability of adolescents with diabetes to properly perform self-care activities; therefore, it seems that receiving adequate and consistent education from the health team can probably improve adolescents’ self-care activities.

Hiding the illness from friends

Hiding the condition from friends and peers can adversely affect diabetes self-care in adolescents. Concealment may prevent them from performing self-care activities such as blood glucose monitoring. This behavior often stems from adolescents’ reluctance to feel different from their peers [35]. Some peers mistakenly believe that diabetes is contagious, which leads adolescents to hide their condition from their friends [33]. Other studies have shown that adolescents may hide their illness from peers due to embarrassment [31], fear of bullying [32], social stigma [36, 38], and concerns about undesirability to the opposite sex [33]. Additionally, some adolescents conceal their condition to avoid discrimination within their peer groups [33]. Sometimes, peer pressure leads adolescents to neglect self-care activities; consequently, teens with diabetes often prefer to hide their condition from peers from the outset [27].

Insufficient training

Receiving inadequate or overly complex information that adolescents cannot understand is a significant barrier to diabetes self-care [27]. Without adequate and effective education from their healthcare team, adolescents with diabetes will struggle to manage their condition properly [36, 37]. Another study noted that contradictory information provided by healthcare professionals or information that is not applicable to adolescents’ real-life situations can be a barrier to diabetes self-care [35]. Additionally, short duration of educational sessions has also been identified as an obstacle to effective self-care [37].

Fear of needles

Fear of needles is a significant barrier to self-care in adolescents with diabetes [38]. Some adolescents delay or neglect their insulin injections due to injection pain and needle phobia [26]. Babler’s study highlighted that frequent blood sugar monitoring is an essential method of diabetes management, and adolescents need to overcome their fear of needles to adhere to this practice [28]. However, with the advancement of science and the introduction of insulin pumps, the frequency of insulin injections has decreased, enhancing adolescents’ sense of normalcy [31].

Treatment cost

Adolescents from lower-income families are more likely than those from wealthier families to perceive the cost of self-care as a barrier [39]. This may be due to various reasons, including some adolescents reporting an inability to maintain a diet suitable for their illness because of their family’s financial constraints [26, 33]. One study also noted that the high cost of blood glucose test strips prevents adolescents with diabetes from regularly monitoring their blood sugar levels [36]. Additionally, the high cost of insulin makes it difficult for low-income families to afford this essential medication [33]. Insurance can make a significant difference in reducing medical costs and making it easier for teens to access self-care facilities. Research shows that government insurance can reduce care costs much more than private insurance [39].

Lack of resources

Lack of resources reduces adolescents’ motivation to self-manage their diabetes, including limited access to insulin and appropriate nutrition [33, 38]. Shortages of essential supplies such as insulin pens, syringes, and insulin pumps are common among patients. Additionally, lack of 24-hour access to critical diabetes management services poses a significant barrier for low-income families [34, 39]. The lack of diabetes specialists, the high cost of insulin, challenges related to medication and diet, and poverty are significant barriers to self-care for adolescents with diabetes [33].

Denial of illness

Denial of the disease is a significant barrier to diabetes self-care, leading to non-acceptance and lack of commitment to managing the illness. Conversely, acceptance of the disease fosters belief in one’s ability to manage it, encourages taking responsibility, and promotes adherence to proper care. Adolescents must understand that diabetes is a lifelong condition and adapt to new circumstances by making necessary lifestyle changes [28]. Therefore, negative feelings about diabetes and denial of the disease are barriers to self-care [37]. However, another study found that while adolescents often accept their condition and do not deny it, parents may struggle to fully accept their adolescent’s diabetes. This difference could be attributed to psychological and social variations at different ages [27]. Additionally, being diagnosed with diabetes at a younger age facilitates easier adaptation and acceptance of the disease by adolescents [35].

Teachers

Lack of school support and negative attitudes from teachers discourage adolescents with diabetes from engaging in self-care activities at school. Moreover, the food provided in schools often does not meet the dietary restrictions necessary for diabetes management, and consuming such food disrupts self-care efforts [38]. Teachers who do not permit self-care activities in their classrooms and provide negative feedback to adolescents are significant challenges to diabetes self-care [32, 37].

Conflict with parents

Some parents allow their adolescents complete independence in self-care, while others assist with these tasks. Parents often remind their children about self-care behaviors, which adolescents may find annoying. These reminders stem from the fact that, although adolescents are aware of their health status, they tend to prioritize social activities over self-care [35]. Another study indicated that parental scolding and criticism toward adolescents are not only ineffective but also discourage them from performing self-care activities [28]. Additionally, family dynamics can act as environmental barriers to diabetes self-care. Constant parental warnings often confuse adolescents and make them feel inadequate, further hindering their self-care efforts [37].

Mental state

Another obstacle to diabetes self-care in adolescents is lack of self-confidence and feelings of incompetence in self-care, which causes adolescents to not perform self-care activities [36]. In principle, belief in the possibility of managing diabetes occurs when the adolescent has sufficient self-confidence to manage diabetes, decision-making skills, and the desire to successfully control the disease. Therefore, changing attitudes and understanding that diabetes is controllable is effective in better self-care and increasing adolescents’ self-confidence [28]. Research has also shown that stress reduces the ability of adolescents to self-manage diabetes. One of the psychological stressors is the fear of death due to diabetes, which causes adolescents to avoid insulin injections as much as possible so that they are not reminded of diabetes and its associated death. It seems that participation in psychosocial support and psycho-educational activities is helpful [33].

Discussion

Self-care is a key component of proper diabetes management [40]. Research findings indicate that diabetes self-care in adolescents is challenging and depends on several factors. A review of the existing literature indicates that various factors—from the influence of parents and friends to diabetes education, economic factors, and fear of needles—play important roles in the self-care needs of adolescents with type 1 diabetes [28, 36, 37]. The diversity and multiplicity of self-care needs clearly indicate that diabetes education alone does not empower patients for self-care; therefore, diverse strategies are necessary to address the self-care needs of patients with diabetes [40]. Cultural and socio-economic differences among countries play a decisive role in shaping the self-care needs and barriers experienced by adolescents with type 1 diabetes. Socio-economic inequalities may limit access to adequate healthcare, and educational resources, thereby affecting the quality of diabetes management. Therefore, consideration of cultural and economic differences across countries is essential when interpreting the findings of this review [33, 34, 37, 38]. The biggest challenge during adolescence is maintaining stable blood sugar levels as teenagers enter puberty. Diabetes self-care is a heavy burden, and adolescents are constantly under evaluation. Diabetes self-care requires knowledge and skills, and adolescents’ information must be constantly updated—particularly regarding new foods and the coordination between insulin and exercise. Therefore, as the Strand study points out, diabetes management is time-consuming, especially during school hours, when finding time to address diabetes can be challenging [25]. According to the research findings, independence in diabetes self-care among adolescents is a double-edged sword. While some studies indicate that gaining independence from strict parental supervision enables better diabetes management, others suggest that this independence leads adolescents to hide their condition from friends and acquaintances, potentially causing further harm [25, 33]. For adolescents, none of the diabetes self-care behaviors is more important than others for better blood sugar control, whereas for parents, exercise is deemed more important for achieving better blood sugar control. According to Palladino, adolescents’ personality traits can also influence their diabetes self-care. For example, conscientiousness—a positive trait—affects adherence to insulin regimens and diet, whereas the influence of peers who encourage inappropriate self-care behaviors represents a negative factor [24]. One of the barriers to diabetes self-care in adolescents is fear of needles, which hinders blood sugar testing and proper insulin injection, ultimately leading to poor disease control [38]. According to Palladino, the most significant negative factor affecting diabetes self-care is distraction or busyness; therefore, appropriate planning for self-care activities should be considered [24]. On the other hand, diabetes education that highlights disease complications can enhance self-care motivation and reduce adolescents’ distraction [32]. Finally, it should be noted that the primary goal of diabetes care—namely, blood sugar control and prevention of complications—cannot be achieved without the patient’s serious participation. At the same time, caregivers can help adolescents implement their desired self-care by motivating and engaging them through encouragement and support for their right decisions [40].

Conclusion

A review of the research findings indicates that reducing the burden of diabetes-related complications requires urgent implementation of self-care activities across multiple domains. These domains include diet management, physical activity and exercise, recognition of blood glucose crises and timely intervention, acquisition of knowledge about insulin, family support for adolescents, fostering independence from parents, peer support, diabetes education, healthcare provider support, and attention to spiritual needs. The role and responsibility of physicians in facilitating and promoting self-care are critical. Barriers to self-care encompass factors that hinder patients or parents from accessing, receiving, and utilizing comprehensive, patient-centered, coordinated, accessible, and high-quality care. In this study, such barriers included hiding the disease from friends, inadequate education, fear of needles, treatment costs, lack of resources, challenges with teachers, denial of the disease, and conflicts with parents. It is recommended that, to facilitate more effective implementation of self-care activities among adolescents with diabetes, healthcare teams conduct regular educational workshops for the target group, focusing on diabetes and strategies for preventing its complications. All healthcare team members responsible for diabetes education should utilize a single, scientifically credible source—such as the American Diabetes Association website—as a fixed educational reference to ensure consistency of information and prevent patient confusion. Educational sessions should be adequate in duration, frequency, and content complexity, aligned with adolescents’ comprehension levels. Furthermore, conducting diabetes education sessions through national media and schools is deemed essential to enhance awareness among peers of affected adolescents and their families, reduce associated social stigma, and enable adolescents to perform self-care activities more comfortably in the presence of friends. Given that adherence to an appropriate diet constitutes one of the most critical components of self-care among adolescents with type 1 diabetes, conducting educational programs on carbohydrate counting is essential to achieve dietary flexibility and optimal blood glucose control.

One of the basic needs of adolescents with diabetes seems to be the existence of organizations that are constantly available so that adolescents can communicate with diabetes experts at any time of the day and night to get answers to their questions and receive guidance. It is recommended that governments allocate the necessary financial resources to these organizations so that they can help needy families in providing insulin and other essential items for adolescents’ self-care. One of the limitations of this study is that it was conducted as a narrative review and despite extensive searching of international databases, some relevant studies may have been overlooked. In addition, a significant portion of the reviewed articles were conducted in countries with relatively favorable health systems and financial resources; therefore, generalization of the findings to resource-limited settings should be done with caution.

Author contributions

Study conception and design: S.S., M.S., R.M and S.S; Data collection: S.S and S.S; Analysis and interpretation of results: S.S., M.S., R.M and S.S; Draft manuscript preparation: S.S and S.S; All authors read and approved the final manuscript.

Funding

Not Funding.

Data availability

Available on reasonable request to the corresponding authors.

Declarations

Ethics approval and consent to participate

Ethical approval for this study has been attained by the Ethics Committee of the Arak University of Medical Sciences, Arak, Iran (code number: IR.ARAKMU.REC.1402.143). we confirm that all experiments were performed in accordance with declaration of Helsinki.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.