Caring for Children and Adolescents with Type 1 Diabetes in the School Setting in India: The Importance of Adequate Support

Type 1 diabetes is less common than type 2 diabetes. A recent meta-analysis suggested an incidence of 15 per 100,000 people.[1] However, these numbers belie the impact of the disease on the individual and the family. Often, parents and patients are overwhelmed with the daunting task of needing to take insulin therapy lifelong. Add to that the need for long-term monitoring of blood glucose levels and the risk of developing diabetic complications such as blindness, kidney failure, and foot amputations. In countries like India, the cost of diabetes care-insulin delivery systems and glucose measurement tools-is a considerable burden to the family. It turns out that these concerns are not unfounded, as type 1 diabetes is associated with serious micro- and macrovascular complications.[2] In a study of type 1 diabetes from North India, the annual cost of treatment came to Rs. 55,000/- and this is not including inpatient care when needed.[3] Understandably continuous glucose monitoring and insulin pump therapy are beyond the reach of most patients-indeed more than a third of the families needed to borrow money for care.[3] Fortunately, there is a good news. The diagnosis of type 1 diabetes can easily be made clinically, and both comprehensive as well as resource-limited diagnostic protocols exist. There is little need for ruling out monogenic diabetes through extensive tests unless there are compelling indications.[4,5] Despite challenges, appropriate insulin therapy is possible.[6] Newer drugs such as teplizumab are making their mark in preventing type 1 diabetes.[7] One area of particular importance is the issue of school-going children with type 1 diabetes in India. There is no question that parents and school staff have to work together to take care of these children. Furthermore, children with type 1 diabetes should not be stigmatized or made to feel different; indeed they should be encouraged to take part in all activities that other children participate in. School staff as well as students should be aware of the generalities and to an extent, the practicalities of type 1 diabetes to facilitate an inclusive approach to school support. In some countries like Canada, reasonable legislative guidance exists for managing children with diseases.[8] However, despite this, children with diabetes do not receive 100% inclusivity and are often denied entry into daycare and after-school programs.[8] What is the experience on the care of type 1 diabetes in schools of India? In a recent study of 397 patients, it was found that much more needed to be done to make schools into a safe and joyful place for type 1 diabetes.[9] Indeed, 17.9% of subjects reported that the school excluded them from sports and excursions. More than 4% of subjects reported that schools refused permission for testing, injection, or preactivity snacks. Around 12% of students reported that the school insisted on secrecy. This study also reported that care was better for private schools when compared to government schools and also that the higher the parental education, the better the school-based diabetes care was likely to be. There are positive examples of initial steps taken in India to make schools a safe place for children with diabetes. An example is the Kids and Diabetes in Schools (KiDS) project.[10] In addition to type 1 diabetes, the study also looked at the prevention of type 2 diabetes, making its focus a little broader. Nevertheless, the study seems to have had a comprehensive approach-phase 1 of the study was a situational analysis where the team studied the data, while phase 2 included teachers, students, and parents in educational programs. The study had a satisfactory results. Both government and private schools in Delhi were included in this study, which was based on the school pack of the International Diabetes Federation-later the Kids and Diabetes in Schools (KiDS) team developed their own toolkit and guidance that have been made available internationally. One of the most comprehensive documents on the subject is the International Society for Pediatric and Adolescent Diabetes position statement on type 1 diabetes in schools.[11] This statement gives comprehensive guidance on the care of children with type 1 diabetes in schools. In Table 1, we have taken some of the recommendations from this manuscript and made addition, given the prevailing realities in India. In addition, initiating peer support programs within schools can demystify various health conditions including diabetes for students, build strong support networks, and promote a culture of inclusivity and empathy among peers.Table 1: Ten recommendations for better management of type 1 diabetes in India[ 11 ]In a positive development, it has been reported that India’s National Commission for Protection of Child Rights (NCPCR) has written to education boards in India, mentioning that it is the duty of schools to ensure that children with type 1 diabetes are provided with proper facilities;[12] these include a mid-afternoon snack, and also specific guidance while writing examinations, during which students with type 1 diabetes should be allowed to carry medicines, water, snacks, glucose meters, glucose testing strips, continuous glucose monitoring devices, and insulin pumps. However, the guidance from the NCPCR needs to be implemented by all the states of India. For that to happen, it needs to become a law. While we as authors do not claim to be legal experts, some regulatory framework for schools to provide adequate facilities will need to happen. Indeed, it has been alleged that a child with type 1 diabetes has been refused admission to a school, requiring government intervention.[13] People with type 1 diabetes from India have a suboptimal quality of life.[14] There have been successful models of care for people with type 1 diabetes through specialized clinics as part of governmental initiatives.[15] What is now needed is to integrate a nationwide health-care program with an in-school program specifically for managing type 1 diabetes. This would include simple guidelines for basic school infrastructure, training programs for school staff, and operational research to assess how effective the interventions are. Finally, this should be followed by a validated checklist for schools (for taking care of type 1 diabetes), and ultimately resulting in a guideline that is strengthened by making it mandatory by law for school thereby ensuring support to be offered to all children with type 1 diabetes.

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