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NIH grant 1R01HD122814-01: CARE@HOME, a digital health intervention to prevent serious health events in children with neurologic impairment
Institute: {'code': 'HD', 'abbreviation': 'NICHD', 'name': 'Eunice Kennedy Shriver National Institute of Child Health and Human Development', 'admin_org_id': '12500030', 'admin_funding_url': ''}. PI: Ryan J Coller. Award: $737192.
Start: 2026-09-11T00:00:00.
PROJECT SUMMARY
Children with neurologic impairment (NI) have central nervous system conditions causing permanent cognitive
and motor impairment as well as medical complexity. This population is uniquely vulnerable to serious health
events, defined as death or hospitalization, due to extreme medical fragility, comorbidities, and reliance on
complicated treatment plans managed by under-supported families. Children with NI account for over 5% of all
pediatric hospitalizations and over 25% of pediatric hospital days, with 1-year mortality of 5-10% after intensive
care admissions. Multimorbidity from NI creates highly complex caregiving work that is thrust upon families.
Family caregiver acute illness self-efficacy, i.e., confidence about one’s ability to perform the work to manage
their child’s acute health needs, is a key determinant of preventable serious health events. However, achieving
caregiving mastery is haphazard and inconsistent, and many families never become fully confident in
managing acute illness. Interventions designed to efficiently and systematically increase caregiver acute illness
self-efficacy have high potential to reduce serious health events for children with NI. To address this critical
need, we will adapt a novel mobile health (mHealth) intervention from the highly usable, feasible @HOME
platform to create CARE@HOME. CARE@HOME will be designed to improve caregiver acute illness self-
efficacy by helping caregivers monitor, prevent, and respond to acute illness. CARE@HOME will integrate
evidence-based features including monitoring daily health indicators, serial evaluations of confidence to avoid
hospitalization, acute illness action plans, and decision support to guide family response when monitoring data
indicating high risk for serious health events. We propose to conduct the following aims: 1) Design
CARE@HOME through co-design with stakeholders in a parallel design process with two design teams: one
with caregivers of children with NI and one with experts in clinical care; and 2) Evaluate the effectiveness of
CARE@HOME to reduce serious health events in a multisite randomized controlled trial, testing the hypothesis
that serious health events are reduced with the use of CARE@HOME. Analyses will also explore whether the
intervention effect is mediated by increases in caregiver acute illness self-efficacy. Completion of the aims will
result in a scalable mHealth intervention that improves caregiver-delivered acute illness care for children with
NI. CARE@HOME, when perfected, can improve acute and chronic illness care across the wide range of
populations depending on caregiving by others at home.document fetched 2026-09-20 02:42