[R01] Caregiving network contribution to children with medical complexity’s health
Ente: Eunice Kennedy Shriver National Institute of Child Health and Human Development
Scadenza: 2029-12-31
Importo max: 659.204 EUR
Paese: US
Descrizione
PROJECT SUMMARY
The quantity and quality of daily care needed by children with neurologic impairment (NI), i.e., a neurologic
disorder with functional and/or intellectual disabilities, averages >50 hours/week and surpasses what is
considered safe for one individual. Without support to accomplish these tasks, severe health consequences
can occur, including severe illness exacerbations requiring hospitalization, missed school, lower quality of life,
and financial and social hardship. In fact, 25% of all hospital days in children’s hospitals are for children with
NI. To address these realities, families of children with NI attempt to create caregiving networks, e.g., extended
family, home nurses, respite providers, school aides, etc., to meet their extensive and technical care needs.
However, families must develop their own systems to identify, recruit, and manage network members to ensure
safe and high-quality daily care for their child. To maximize health in this population, there is an urgent need to
understand how caregiving networks assemble and operate to influence child health outcomes.
Data from our pilot work indicates that smaller, denser networks, with more triadic closure (e.g., closed
communication loops and professional caregivers correlate with fewer serious health events, defined as death
or hospitalization. Further, our qualitative work indicates that the caregiving networks for children with NI are
potentially modifiable through network-based interventions. Thus, to maximize health there is an urgent need
to understand how caregiving networks influence child health outcomes. To achieve our long-term goal to
improve the health of children with NI through optimized caregiving networks, we propose to conduct essential
Stage 0 research (NIH Stage Model for Behavioral Intervention Development) using a mixed methods
approach to understand how caregiving networks influence health outcomes for children with NI. We will use
standard ego-centric social network approaches to identify the contributions of caregiving network
characteristics to serious health events and child quality of life. We will also conduct qualitative interviews to
identify barriers, facilitators, and consequences of caregiving network characteristics for this population. If
successful, this Stage 0 research will be immediately followed by Stage 1-3 research to generate, adapt, and
pilot test an intervention to promote caregiving network function and improve the health of children with NI.
Istituzione: UNIVERSITY OF WISCONSIN-MADISON
PI: Ryan J Coller, Nicole E Werner
Progetto: 5R01HD114789-02
Settori: Eunice Kennedy Shriver National Institute of Child Health and Human Development
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