The program of multidisciplinary online support of children with spina bifida in Ukraine during the war

Abstract

Background. The Russian aggression against Ukraine has exacerbated the challenges faced by children with spina bifida (SB). Access to healthcare is severely impacted due to security concerns, restricted mobility, and mass displacement. To address these issues and improve access to medical care, we launched a project titled “The program of multidisciplinary online support of children with spina bifida in Ukraine”. The aim: to present the program of multidisciplinary online support of patients with SB and their families during the war for improving healthcare for this vulnerable group of patients at a time of limited opportunities. Methods. The project ran from June to December 2022 and involved collaboration of the NGO “Lights of Spirit”, doctors, and specialists including a lawyer, a psychologist, a social worker, a teacher. This multidisciplinary team worked together to provide comprehensive assistance to families with children having SB. Results. Overall, 149 families with children with SB and hydrocephalus from nearly all regions of Ukraine participated in the project. Initially, 82 online consultations were conducted. Nineteen online meetings were organized for parents with the involvement of a physical therapist, an occupational therapist, and a psychologist and 87 families took part in these meetings. Parents and children with SB received online consultations from doctors of the multidisciplinary team, as well as examination, treatment, necessary care products, and medicine tailored to their individual needs. The project also provided educational, informational, and psychological support. Conclusions. The program of multidisciplinary online support of children with SB in Ukraine during the Russian invasion confirmed its significance, necessity, and effectiveness. It facilitated the formation of partnerships between patients, parents, and clinicians. The project showed the problems of prevention and care of children with SB and also prospects for future development in this field.