Type 1 diabetes mellitus (T1DM), previously referred to as juvenile diabetes, is a chronic autoimmune disorder predominantly affecting children and adolescents. It is characterized by autoimmune destruction of pancreatic beta cells, resulting in insulin deficiency and hyperglycemia. Globally, the incidence of T1DM in pediatric populations is on the rise, necessitating increased awareness and early identification of risk factors among caregivers and healthcare providers alike [1].

T1DM often presents with classic symptoms such as polyuria, polydipsia, unexplained weight loss, and fatigue. However, in many pediatric cases, these signs may be misinterpreted or overlooked, leading to delayed diagnosis and complications like diabetic ketoacidosis (DKA)[2]. Recent studies indicate a worrying trend of increasing DKA incidence at presentation, especially during the COVID-19 pandemic, attributed to reduced access to healthcare and low parental awareness[3].

The early onset of T1DM poses numerous challenges for both affected children and their families. The burden extends beyond medical care, impacting psychological well-being, schooling, dietary habits, and social functioning. Parents, as primary caregivers, play a pivotal role in disease management. Their understanding of early warning signs, dietary modifications, and glycemic monitoring can significantly alter disease outcomes [4]. However, several studies have demonstrated that caregiver knowledge remains suboptimal, particularly in low-resource settings [5].

In addition to symptoms, certain risk factors such as family history of diabetes, consanguineous marriage, poor nutrition, low physical activity levels, and certain viral infections have been implicated in the pathogenesis of T1DM[6]. Advances in predictive screening tools such as islet autoantibody testing and continuous glucose monitoring have improved the early identification of at-risk children, but these remain underutilized in primary care[7].

Educational institutions also play an essential role in pediatric diabetes care. School nurses and teachers must be equipped with basic knowledge to identify symptoms and respond appropriately to hypoglycemic or hyperglycemic episodes[8]. Studies suggest that diabetes-related training for school personnel is highly variable and often insufficient[9].

Against this backdrop, the present study aims to evaluate the awareness and risk indicators of juvenile diabetes among caregivers of children aged 5–16 years using a structured questionnaire. By identifying gaps in knowledge and prevalent risk factors, the study seeks to inform the design of public health interventions focused on early diagnosis and prevention.

Study Design and Setting

A cross-sectional, questionnaire-based survey was conducted Jan 2024-march 2024 in pediatric outpatient departments and selected urban schools. The aim was to assess the risk factors and awareness of juvenile diabetes mellitus (Type 1 Diabetes Mellitus, T1DM) among caregivers of children aged 5–16 years.

Study Population

The study included caregivers (primarily parents) of children between the ages of 5 to 16 years who were either attending pediatric clinics for routine check-ups or were enrolled in local primary and middle schools. Only one caregiver per child was surveyed.

Inclusion Criteria:

• Caregivers of children aged 5–16 years.
• Willing to participate and provide informed consent.
• Literate and able to understand the survey language (English or local translation).

Exclusion Criteria:

• Caregivers of children already diagnosed with T1DM.
• Incomplete responses to over 20% of the questionnaire.

Sample Size

Using a confidence level of 95%, expected awareness prevalence of 50%, and a 7% margin of error, the minimum required sample size was calculated to be 196. To account for incomplete responses, a total of 250 caregivers were approached.

Questionnaire Design

A pre-validated, structured questionnaire consisting of both closed- and open-ended questions was used. The tool was developed through literature review and expert consultation, and pilot-tested in a subset of 20 participants for clarity and reliability.

The questionnaire had four sections:

1. Demographics: Age, sex, education, and occupation of caregiver; age and gender of child.
2. Family History and Lifestyle: Presence of diabetes among first-degree relatives, dietary habits, physical activity patterns.
3. Knowledge and Awareness: Awareness of symptoms like excessive thirst, polyuria, weight loss, fatigue, and behavioral changes.
4. Screening and Prevention Practices: History of glucose testing, use of preventive dietary habits, vaccination status.

Data Collection Procedure

Trained field investigators administered the questionnaire in-person after obtaining written informed consent. Each interview took approximately 15–20 minutes. For school-based data, caregivers filled the questionnaire during parent-teacher meetings under supervision.

Statistical Analysis

Data were entered into Microsoft Excel and analyzed using SPSS version 25.0. Descriptive statistics (means, standard deviations, percentages) were used to summarize data. Chi-square tests were applied to examine associations between awareness levels and variables like education, family history, and socioeconomic status. A p-value <0.05 was considered statistically significant.

Table 1: Demographic Profile of Caregivers and Children

Among the 250 participants, a majority of caregivers were females (68.8%), and middle socioeconomic class (55.2%) predominated. Most caregivers had completed at least secondary education, with 36% being graduates. The mean caregiver age was approximately 36 years, suggesting a predominantly middle-aged respondent pool. Regarding the children, 53.6% were male and 60.8% belonged to the 11–16 age group, indicating that the survey effectively targeted school-age children in both primary and secondary levels.

Table 2: Awareness of Diabetes Symptoms among Caregivers

Findings reveal low overall awareness of classic symptoms of type 1 diabetes among caregivers. Only 18.4% recognized excessive thirst, and 16.8% identified frequent urination as warning signs. A mere 12% acknowledged unexplained weight loss as a potential symptom, while signs like fatigue (7.2%) and bedwetting (5.6%) were even less recognized. Alarmingly, 40% of respondents were completely unaware of any diabetic symptoms. These results emphasize the critical gap in caregiver education and the risk of delayed diagnosis in children.

Table 3: Family History and Lifestyle Risk Factors

About 24.8% of respondents reported a positive family history of diabetes, aligning with known genetic predispositions. High-sugar diet intake was reported in 43.2% of children, indicating a strong lifestyle-based risk factor. 35.2% of the children were described as physically inactive, contributing further to potential metabolic dysregulation. Obesity, although lower in prevalence (8.8%), remains a notable concern due to its growing linkage with insulin resistance and autoimmune triggers in at-risk children.

Table 4: Association of Awareness with Family History and Education Level

This analysis demonstrated statistically significant associations between caregiver awareness and both family history (p = 0.03) and educational attainment (p = 0.001). Among those who were aware of T1DM symptoms, 29.3% had a family history of diabetes, compared to 18% among the unaware. Similarly, 45.3% of aware caregivers were graduates, as opposed to only 22% in the unaware group. These findings underscore the influence of both personal experience and educational background on health literacy and proactive health behavior.

Table 1: Demographic Profile of Caregivers and Children (n = 250)

Table 2: Awareness of Diabetes Symptoms among Caregivers

Table 3: Family History and Lifestyle Risk Factors

Table 4: Association of Awareness with Family History and Education Level

This study aimed to assess caregiver awareness and associated risk factors for juvenile diabetes (Type 1 Diabetes Mellitus, T1DM) in the pediatric population. The findings highlight significant knowledge gaps, especially among caregivers without a familial background of diabetes and those with lower educational attainment. These results align with global trends in early T1DM recognition and underscore the need for community-based diabetes education initiatives.

In the present study, only 18.4% of caregivers could identify excessive thirst, and 16.8% recognized polyuria as key diabetic symptoms. Alarmingly, 40% reported complete unawareness of any symptom. These results are in concordance with Knoll et al., who found that psychological distress and lack of structured education negatively impact disease recognition among both parents and children, thereby delaying diagnosis and treatment initiation[11]. Similarly, Alamoudi et al. observed that cultural and social barriers significantly hinder T1DM knowledge acquisition in households with no prior diabetic experience[12].

Our data further showed a significant association between family history and symptom awareness (p = 0.03). This finding mirrors the results from Houben et al., who studied the emotional burden in families participating in T1DM prevention trials and reported that prior diabetes exposure improved knowledge and screening behavior[13]. Likewise, the SWEET registry study by Limbert et al. emphasized that caregiver familiarity with diabetes-related autoantibody testing is higher among families with affected members, suggesting prior exposure encourages proactive health-seeking behavior[14].

Education was another strong determinant of caregiver awareness. Graduates were more likely to correctly identify symptoms and seek screening, with a statistically significant association (p = 0.001). This correlates with Addala et al.’s Project ECHO model, which demonstrated that tele-education can be highly effective in empowering primary caregivers and health workers through simple and scalable interventions[15].

Our lifestyle assessment revealed that 43.2% of children consumed high-sugar diets, and 35.2% led sedentary lifestyles. These modifiable risk factors, while not directly causative of T1DM, can contribute to metabolic stress and poor glycemic adaptation in genetically predisposed children. Studies like those by Parent et al. have linked reduced physical activity to glycemic variability, particularly in children with T1DM[16]. Ripoli et al. also reported that emotional eating behaviors are increasingly observed in diabetic adolescents, suggesting the need for holistic nutritional counseling in diabetes prevention programs[17].

Furthermore, 24.8% of caregivers reported a family history of diabetes—a major unmodifiable risk factor. Screening of asymptomatic children in such families has been shown to be beneficial. Quinn et al. recommended integrating presymptomatic T1DM screening into primary care visits for high-risk children, which may include islet antibody testing or glucose tolerance evaluations[18].

The COVID-19 pandemic has also indirectly influenced disease presentation and recognition. Göldel et al. from the KICK-COVID study documented reduced healthcare access during lockdowns, contributing to more severe presentations at diagnosis[19]. In line with this, Mashali et al. highlighted that delayed recognition of autonomic symptoms (e.g., gastroparesis, nausea) in pediatric T1DM patients could lead to unnecessary investigations and delayed insulin therapy initiation[20].

Despite these insights, this study has several limitations. The data are self-reported and subject to recall bias. Caregiver knowledge may also be influenced by recent personal or media experiences. Moreover, the study was limited to urban and semi-urban settings, potentially overlooking rural variations in awareness and access to screening tools.

Nonetheless, the findings have important implications for public health. The significant association between awareness and educational level implies that health education campaigns should be tailored and multilingual, using visual tools to improve outreach. School-based programs and mobile health technologies could be effective in reaching young caregivers.

This study highlights a significant gap in awareness among caregivers regarding early signs and risk factors of juvenile diabetes mellitus. With nearly 40% of participants unaware of classic symptoms such as polyuria, polydipsia, and unexplained weight loss, there exists an urgent need for structured educational interventions at the community level. The findings also underscore the role of caregiver education and family history in shaping diabetes awareness and risk perception. Notably, higher awareness was significantly associated with a family history of diabetes and graduate-level education. Lifestyle risk factors like high sugar consumption and physical inactivity were prevalent among children, emphasizing the need for preventive counseling. Public health strategies should incorporate school-based screening, targeted health education for parents, and primary care reinforcement for early diagnosis and referral. Early identification and education are critical to reducing disease burden and improving long-term outcomes in the pediatric population.

1. Balcázar-Hernández L, Huerta-Martínez H, Garrido Magaña E, Nishimura-Meguro E, Jiménez Márquez A, Rivera-Hernández A. Burden in primary informal caregivers of children and adolescents with type 1 diabetes: Is it associated with depression, family dysfunction, and glycemic control? Front Endocrinol (Lausanne). 2023 Jan 19;13:1089160. doi:10.3389/fendo.2022.1089160.
2. Elgenidy A, Awad AK, Saad K, Atef M, El-Leithy HH, Obiedallah AA, et al. Incidence of diabetic ketoacidosis during COVID-19 pandemic: a meta-analysis of 124,597 children with diabetes. Pediatr Res. 2023 Apr;93(5):1149-1160. doi:10.1038/s41390-022-02241-2.
3. Choudhary A, Adhikari S, White PC. Impact of the COVID-19 pandemic on management of children and adolescents with Type 1 diabetes. BMC Pediatr. 2022 Mar 10;22(1):124. doi:10.1186/s12887-022-03189-2.
4. Saßmann H, Kim-Dorner SJ, Berndt V, Biester T, Dehn-Hindenberg A, Heidtmann B, et al. Understanding daily, emotional, and physical burdens and needs of parents caring for children with type 1 diabetes. J Diabetes Res. 2022 Dec 13;2022:9604115. doi:10.1155/2022/9604115.
5. Stefanowicz-Bielska A, Słomion M, Rąpała M. Knowledge of school nurses on the basic principles of type 1 diabetes mellitus self-control and treatment in children. Int J Environ Res Public Health. 2022 Dec 9;19(24):16576. doi:10.3390/ijerph192416576.
6. Albishi LA, AlAmri E, Mahmoud AA. Relationships among consanguinity, family history, and the onset of type 1 diabetes in children from Saudi Arabia. Prim Care Diabetes. 2022 Feb;16(1):102-106. doi:10.1016/j.pcd.2021.09.002.
7. Chiarelli F, Rewers M, Phillip M. Screening of Islet Autoantibodies for Children in the General Population: A Position Statement Endorsed by the European Society for Paediatric Endocrinology. Horm Res Paediatr. 2022;95(4):393-396. doi:10.1159/000525824.
8. O'Grady MJ, Hurley SA, McCollum DC. School-based management of type 1 diabetes in the Republic of Ireland: a cross-sectional mixed-methods analysis. Ir J Med Sci. 2023 Jun;192(3):1137-1142. doi:10.1007/s11845-022-03058-y.
9. Quinn LM, Rashid R, Narendran P, Shukla D. Screening children for presymptomatic type 1 diabetes. Br J Gen Pract. 2022 Dec 21;73(726):36-39. doi:10.3399/bjgp23X731709.
10. Addala A, Filipp SL, Figg LE, Anez-Zabala C, Lal RA, Gurka MJ, et al. Tele-education model for primary care providers to advance diabetes equity: Findings from Project ECHO Diabetes. Front Endocrinol (Lausanne). 2022 Dec 16;13:1066521. doi:10.3389/fendo.2022.1066521.
11. Knoll C, Schipp J, O'Donnell S, Wäldchen M, Ballhausen H, Cleal B, et al. Quality of life and psychological well-being among children and adolescents with diabetes and their caregivers using open-source automated insulin delivery systems: Findings from a multinational survey. Diabetes Res Clin Pract. 2023 Feb;196:110153. doi:10.1016/j.diabres.2022.110153.
12. Alamoudi RM, Aljohani NJ, Alfadhli EM, Alzaman N, Alfadhly AF, Kallash MA, et al. Fasting Ramadan in patients with T1DM - Saudi Arabia versus other countries during the COVID-19 pandemic. Diabetes Metab Syndr. 2023 Jan;17(1):102676. doi:10.1016/j.dsx.2022.102676.
13. Houben J, Janssens M, Winkler C, Besser REJ, Dzygalo K, Fehn A, et al. The emotional well-being of parents with children at genetic risk for type 1 diabetes before and during participation in the POInT-study. Pediatr Diabetes. 2022 Dec;23(8):1707-1716. doi:10.1111/pedi.13448.
14. Limbert C, Lanzinger S, deBeaufort C, Iotova V, Pelicand J, Prieto M, et al. Diabetes-related antibody-testing is a valuable screening tool for identifying monogenic diabetes - A survey from the worldwide SWEET registry. Diabetes Res Clin Pract. 2022 Oct;192:110110. doi:10.1016/j.diabres.2022.110110.
15. Addala A, Filipp SL, Figg LE, Anez-Zabala C, Lal RA, Gurka MJ, et al. Tele-education model for primary care providers to advance diabetes equity: Findings from Project ECHO Diabetes. Front Endocrinol (Lausanne). 2022 Dec 16;13:1066521. doi:10.3389/fendo.2022.1066521.
16. Parent C, Lespagnol E, Berthoin S, Tagougui S, Heyman J, Stuckens C, et al. Barriers to physical activity in children and adults living with type 1 diabetes: A complex link with real-life glycemic excursions. Can J Diabetes. 2023 Mar;47(2):124-132. doi:10.1016/j.jcjd.2022.10.006.
17. Ripoli C, Ricciardi MR, Zuncheddu E, Angelo MR, Pinna AP, Ripoli D. Emotional eating and disordered eating behaviors in children and adolescents with type 1 diabetes. Sci Rep. 2022 Dec 17;12(1):21854. doi:10.1038/s41598-022-26271-2.
18. Quinn LM, Rashid R, Narendran P, Shukla D. Screening children for presymptomatic type 1 diabetes. Br J Gen Pract. 2022 Dec 21;73(726):36-39. doi:10.3399/bjgp23X731709.
19. Göldel JM, Kamrath C, Minden K, Wiegand S, Lanzinger S, Sengler C, et al. Access to Healthcare for Children and Adolescents with a Chronic Health Condition during the COVID-19 Pandemic: First Results from the KICK-COVID Study in Germany. Children (Basel). 2022 Dec 21;10(1):10. doi:10.3390/children10010010.
20. Mashali G, Kaul A, Khoury J, Corsiglia J, Dolan LM, Shah AS. Screening for Gastric Sensory Motor Abnormalities in Pediatric Patients With Type 1 Diabetes. Endocr Pract. 2023 Mar;29(3):168-173. doi:10.1016/j.eprac.2022.12.014.