Care coordination of children with neurodevelopmental disabilities and medical complexity during the COVID-19 pandemic: Caregiver experiences

Abstract

Background: The COVID-19 pandemic and subsequent public health restrictions created significant challenges for children with neurodevelopmental disabilities with medical complexity and their caregivers including restrictions in care coordination for children and their families. Care coordination enhances families' skills in accessing and coordinating medical, education and disability care across sectors and systems. Objective: This study examined the implications of pandemic restrictions on care coordination from caregiver perspectives. These experiences can inform emergency preparedness planning and recovery strategies. Method: A qualitative descriptive design was utilized to explore and describe the experience of caregivers of children with neurodevelopmental disabilities and medical complexity. Nineteen caregivers were interviewed about their experience with care coordination during the pandemic. Findings: Caregiver experiences of care coordination during the pandemic highlighted the importance of care coordination during a public health emergency. Two themes emerged: (1) disruptions to care coordination from initial COVID-19 restrictions leading to lack of access to supports and services, increasing level of need, and impacts of disruption for caregivers and children; and (2) adaptation and responsiveness to COVID-19 restrictions by advocating for families and managing uncertainties. Recommendations: Recommendations include recognition of care coordination as a protective factor, designation as an essential service and sustained or increased funding for care coordination during emergencies. Families should be engaged in identifying care needs during care coordination, including during public health emergencies.