Russian Diabetes Association

Project idea

The goal of the project "ALFA-ENDO" PROGRAM: social and educational support for adolescents with diabetes mellitus who have lost parental care" is to develop and implement a system of comprehensive social and educational support by mentors for adolescents with disabilities with Type 1 Diabetes (T1D) who are left without parental care. The main task is the development of disease self-management skills and preparing adolescents for independent living.

The Russian Diabetes Association (RDA), in collaboration with the Charitable Foundation "Culture of Giving", specialized regional NGOs, healthcare professionals, educators, and social welfare specialists, will develop and implement a mentoring system in 18 regions. In each region, the RDA team will hold interdisciplinary working meetings, select and train at least 30 mentors from among the parents of children with T1D and volunteers from diabetes associations. These mentors will regularly train 28 adolescents aged 14-18, helping them develop disease self-management skills and social and daily living skills. They will also support adolescents in choosing education and a profession, explain the mechanisms for obtaining medical, social, psychological, and pedagogical assistance, and involve them in the activities of the diabetic community. RDA specialists will provide mentors with ongoing consultative support, monitor, and evaluate the results.

The successful implementation of the project will attract new partners to support adolescents in difficult life situations. This will also contribute to the creation of state standards for assisting graduates of residential institutions with various chronic illnesses, which will be beneficial at the national level.

Relevance

At the beginning of 2023, there were 57 children with T1D in institutional care facilities in Russia, including 28 teenagers aged 14-18. This age group of patients has the poorest control over the disease. Studies show that adolescents with T1D often struggle to follow medical recommendations. The lack of self-regulation skills and poor decision-making in crisis situations can lead to serious complications and even death.

Adolescents deprived of parental care need to learn how to independently manage their health, including proper nutrition, calculating insulin doses, regularly measuring glucose levels, administering injections, and consulting a doctor. At present, this is handled by the staff of the residential care facilities.

Many of these adolescents, upon leaving orphanages, face numerous challenges, including financial difficulties and unemployment, despite receiving help from relatives, children’s home staff, and NGOs (27% from relatives and acquaintances, 22% from children’s home staff, and approximately 10% from mentors and NGOs). The lack of self-regulation skills and the ability to make the right decisions in challenging situations increases the risk of complications that can be fatal.

“Alfa-Endo” program offers a mentoring system where adults with personal experience of living with Type 1 Diabetes (T1D) teach teenagers essential self-management skills and adaptation to life outside of institutional care. This is especially important when, at the age of 18, adolescents begin attending adult medical facilities, where the conditions of care differ from those in pediatric institutions.

The support of the project will enable teenagers with Type 1 Diabetes (T1D) to gain independence, avoid risky situations, and effectively manage their health.

Social effect

Development of social partnership and the establishment of state standards for supporting graduates of boarding schools with chronic diseases. Improving the quality of life for adolescent orphans with diabetes through education on disease management.