“Not designed for families like ours”—barriers to care among families of young children with spina bifida

PURPOSE: Older children with spina bifida (SB) can experience barriers to care, yet the availability of support for younger children with SB (ages 3-6 years) is largely unknown. This study explored caregiver experiences navigating medical and community-based systems of care for children with SB during early childhood. MATERIALS AND METHODS: Twenty-three caregivers (17 mothers, 6 fathers) of 17 children with SB completed both a semi-structured virtual interview and an online survey about resources accessed to promote their child's early development and barriers to care. Interview data were analyzed using content analysis, and survey responses were evaluated using descriptive statistics. RESULTS: Caregivers reported having limited resources available in their community to promote their child's early development, with distance of travel and accessibility as frequent barriers to care. Caregivers also valued SB community connections (e.g., SB medical clinics, adaptive sports, disability groups). Furthermore, 87% of caregivers reported barriers to the use of behavioral health services, including concerns regarding physical accessibility, helpfulness of services, and provider characteristics. CONCLUSIONS: While caregivers value SB-specific medical, psychological, and community resources, both for their child with SB and for their family systems, significant barriers exist in accessing these supports. Findings support the need for specialized interdisciplinary care.