Talk 6: The Program of Multidisciplinary Online Support of Children with Spina Bifida in Ukraine

Mariana Koshmaniuk

Association of Parents of Children with Spina Bifida and Hydrocephalus "Lights of spirit" , Ternopil city, Ukraine

Background: The work by the Association of Parents of Children with Spina Bifida and Hydrocephalus "Lights of spirit" has become most urgent since the beginning of the full-scale war led by Russia in Ukraine. After all, the constant danger of rocket attacks, psychological stress, everyday inconveniences, limited access to medical, social and educational services cause the deterioration of the health of children and adults with Spina Bifida. As a result of the war, some families were forced to move abroad, but most families remain in Ukraine.

Methods: The program of multidisciplinary online support for children with Spina Bifida and Hydrocephalus in Ukraine was implemented by the Association of Parents of Children with Spina Bifida and Hydrocephalus "Lights of spirit" with the assistance of the international organisation.

Results: Special attention will be paid to coordinated complex medical care, informational, psychological, social and right support of children and adults with Spina Bifida, cooperation of NGO "Lights of Spirit" with parents, scientists, leading doctors, and specialists of Ukraine. The project provides online meetings for parents and children with the participation of doctors, specialists, individual consultations, direction to examination and treatment of children in medical institutions of the country, partial provision of care products and medicines considering individual needs. Informational support for families staying abroad.

Conclusion: The effectiveness of treatment, rehabilitation and socialization of children and adults with Spina Bifida depends entirely on multidisciplinary, coordinated support, modern standards of medical and social services and their availability for this category. Especially, these measures are necessary during emergency conditions of war. It is important to establish a system of cooperation between doctors, specialists, the public, and authorities for the exchange of experience, solving current problems, and diverse assistance to families with special lifestyles.