Caregiving network contribution to children with medical complexity’s health

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.