Critical Program Evaluation and Assessment of Unmet Caregiving Needs of Hispanic Family Caregivers of Children with Spina Bifida - Spina bifida (SB) is one of the most common congenital birth defects in the United States. It is a type of spinal cord injury/dysfunction (SCI/D) and is associated with a range of physical and cognitive impairment. Notably, significant racial and ethnic disparities exist in SB outcomes. Hispanic women face the highest risk of having a child with SB, and these children experience poorer health and self-management outcomes compared to their non-Hispanic White peers. Hispanic children with myelomeningocele (MM), the most severe and common type of SB, not only have complex rehabilitation needs, but also health-related social needs. Previous needs assessments of the general SB population have highlighted significant unmet social needs among family caregivers of children with SB. However, these studies required knowledge of English, resulting in the exclusion of many Hispanic family caregivers. A recent program review of the Illinois Spina Bifida Association (ISBA)—a community-based organization supporting individuals with SB—revealed that Hispanic families are disproportionately less likely to utilize care coordination services to address health-related social needs, even when those services are available in both English and Spanish. This study aims to understand and address the disparity in service utilization. The study employs a mixed-method critical participatory action research approach, leveraging a partnership with ISBA. Data will be gathered from English- and Spanish-language surveys and focus groups with Hispanic caregivers of a child with MM. Surveys and focus groups will explore unmet needs and perceived barriers and facilitators to accessing services. The first aim of the study is to identify unmet social needs among Hispanic caregivers. The second aim is to explore sociocultural barriers and facilitators to accessing social services. Qualitative data will be analyzed using reflexive thematic analysis. Moreover, descriptive and inferential analysis will be carried out to identify correlates of perceived family needs. Finally, this study develops organizational recommendations to increase utilization of social services among Hispanic caregivers, using a template analysis of study data that is based on the Consolidated Framework for Implementation Research.
