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

Award Number: K23MD020447
ORGANIZATION: NATIONAL CENTER ON MINORITY HEALTH AND HEALTH DISPARITIES
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: TRAINING/TRAINEESHIP
PERIOD OF PERFORMANCE START DATE: 07/29/2026
PERIOD OF PERFORMANCE END DATE: 12/31/2030

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


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2026 ( Subtotal = $88,195 )
2026	2026	PHOENIX CHILDREN'S HOSPITAL, INC	1919 E THOMAS ROAD	PHOENIX	AZ	85016	MARICOPA	USA	Minority Health and Health Disparities Research	000	1	7/31/2026	NEW	$88,195
2026	2026	PHOENIX CHILDREN'S HOSPITAL, INC	1919 E THOMAS ROAD	PHOENIX	AZ	85016	MARICOPA	USA	Minority Health and Health Disparities Research	001	1	8/11/2026	NEW	$0
														Subtotal = $88,195

Grand Total All Awards = $88,195

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

Award Number: K23MD020447

ORGANIZATION: NATIONAL CENTER ON MINORITY HEALTH AND HEALTH DISPARITIES

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: TRAINING/TRAINEESHIP

PERIOD OF PERFORMANCE START DATE: 07/29/2026

PERIOD OF PERFORMANCE END DATE: 12/31/2030

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