The Hidden Everyday-Life Burden of Pediatric Type 1 Diabetes: A Household Implementation Framework for Modern Diabetes Technology and Family Care.

چکیده اصلی

PURPOSE OF REVIEW: Frameworks that classify the financial burdens of managing pediatric type 1 diabetes (T1D) primarily focus on measurable material hardship, affordability, and cost-related distress and therefore do not sufficiently detail the household-level resources that care requires from families. This study is a conceptual narrative review that aims to integrate the missing elements into a new three-level burden model, thereby linking the costs visible in clinical care, the household implementation burden borne by families, and the lived everyday experience of the child-parent-family triad. The proposed contribution of the model is to interpret the sustainability of modern T1D care not exclusively in terms of technology access, reimbursement, or clinical effectiveness, but also as a function of families' temporal, digital, organizational, and decision-making capacity in relation to everyday self-management, educational-setting coordination, caregiver time investment, digital health literacy, and the digital divide. RECENT FINDINGS: The literature documents direct healthcare costs, out-of-pocket expenses, informal care, dietary adaptation, technology-related costs, parental distress, and time burden well when considered separately. However, these elements often do not appear as an integrated, cumulative household implementation burden. In pediatric T1D, the actual usability and sustainability of technology depend not only on device availability and reimbursement but also on the family's organizational, digital, temporal, and decision-making capacity. The T1D-ELB-P framework interprets the burdens placed on families as an organizing principle: it does not merely list domains but shows how financial, digital, temporal, decision-making, and institutional requirements can accumulate as household implementation burdens. The proposed Type 1 Diabetes Everyday-Life Burden-Pediatric framework (T1D-ELB-P) conceptualizes the everyday-life economic burden of pediatric type 1 diabetes as a complementary dimension interpretable at the household and caregiver levels. It highlights five interrelated domains: lifestyle and dietary adaptation; non-reimbursed or partially reimbursed consumables and accessories; digital infrastructure and digital health literacy; time, attention, and decision burden; and educational, extracurricular, and workplace coordination. In this model, technology is not a separate focus but a cross-cutting factor that makes the implementation work borne by families visible across several domains. The clinical and health-policy significance of the framework lies in its highlighting of how the real-world use of modern T1D care is embedded in the everyday functioning of the child-parent-family triad. Future cost-of-illness, health technology assessment, and patient-centered studies would benefit from explicitly measuring family implementation costs and capacities.

ترجمه فارسی چکیده

مرورهای مفهومی موجود عمدتاً بر هزینه‌های قابل اندازه‌گیری، قابلیت خرید و استرس مالی تمرکز دارند و جزئیات منابع سطح خانواده را که مراقبت نیاز دارد، به درستی ارائه نمی‌دهند. این مرور مفهومی، عناصر گم‌شده را در یک مدل بار سه‌سطحی ادغام می‌کند و هزینه‌های قابل مشاهده در مراقبت بالینی، بار اجرایی خانوادگی و تجربه روزمره کودک-والدین-خانواده را پیوند می‌زند. مدل پیشنهادی، پایداری مراقبت دیابت نوع ۱ مدرن را نه صرفاً بر اساس دسترسی به تکنولوژی، بازپرداخت یا اثربخشی بالینی، بلکه بر اساس ظرفیت زمانی، دیجیتال، سازمانی و تصمیم‌گیری خانواده در زمینه مدیریت خودکار، هماهنگی در محیط آموزشی، سرمایه‌گذاری زمانی مراقب، سواد دیجیتال سلامت و شکاف دیجیتال تفسیر می‌کند.

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