Addressing Health Disparities in Underserved Families of Young Children with Spina Bifida Through a Community-Informed Intervention

About This Grant

Modified Project Summary/Abstract Section Spina bifida (SB) is one of the most common birth defects in the United States. It is well-documented that children with complex neurodevelopmental conditions, such as SB, experience reduced healthcare access and quality. Indeed, almost 50% of primary care physicians report not feeling knowledgeable about SB. Such challenges are amplified for families from low-income and rural backgrounds. Inadequate healthcare and developmental support during early childhood can then widen the cognitive, social-emotional, and behavioral developmental gap for young children with SB. This is especially concerning given the already lower prenatal spinal closure rates for families of children with SB who have Medicaid and live in less-resourced zip codes, a surgery that is linked to more optimal developmental outcomes in early childhood. Digital health interventions (DHI) that target caregiver distress and positive parenting skills are one promising tool to optimize early development. Thus, the proposed research project will use a community-engaged approach to partner with caregiver and healthcare provider advisory boards from the national Spina Bifida Association to co-design a novel parenting DHI for caregivers of young children (ages 2:6-6 years old) with SB, particularly those from low-income and rural backgrounds (Aim 1). To refine the intervention and implementation plan, rapid-cycle testing will then be conducted with 10 families to examine usability, feasibility, acceptability, and proof-of-concept in improving caregiver distress, positive parenting skills, and child developmental outcomes immediately post-intervention and three months post-intervention (Aim 2). Finally, a randomized feasibility trial will be conducted by enrolling families into the DHI group (n=15) or an internet resource comparison group (n=15) to determine protocol feasibility and retention (Aim 3). In alignment with the Accelerated Creation to Sustainment model, the DHI implementation plan will be designed and refined throughout all aims to minimize the research-to-practice gap. To successfully complete the proposed project and transition into an independent clinician-scientist, Dr. Winning will receive additional training and mentorship in the following key areas: (1) early childhood intervention strategies that promote resilience in children with neurodevelopmental disabilities and their caregivers, (2) DHI co-design with low-income and rural populations, (3) design, conduct, and analysis of behavioral trials, and (4) dissemination and implementation science. This project will leave Dr. Winning well-positioned to conduct a full-scale randomized controlled trial and become a leader in developing DHIs to advance health outcomes for families of children with SB.