Availability and Accessibility of Care Services in Russia for Сhildren With Spina Bifida: A Qualitative Study With Parents and Health Care Specialists

Spina bifida (SB) is a complex congenital condition that necessitates lifelong multidisciplinary care. This qualitative study explores the availability and accessibility of care services for children with SB in Russia from the perspectives of families, health care specialists, and charitable organization staff. Conducted in 2025, the study consists of 19 in-depth semi-structured interviews, 8 expert interviews, and 1 focus group. Thematic analysis identified critical systemic barriers, including a profound lack of SB-specific knowledge among primary care physicians, leading to diagnostic delays and misinformation. Access to specialized care, rehabilitation, and essential supplies (eg, catheters) is severely limited, especially in non-capital regions, forcing families to travel to federal centers. Bureaucratic hurdles and inadequate state funding create significant financial and emotional strain. Consequently, families rely heavily on charitable organizations for information, coordination, and psychological support. The study shows that the Russian health care system does not manage to provide coherent and continuous care continuum for children with spina bifida, placing an unsustainable burden on families and highlighting an urgent need for clinical guidelines, specialist education, and systemic reforms.