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.

Alignment of Canada's COVID-19 policy response with barriers and facilitators for coping reported by caregivers of youth with developmental delays, disorders, and disabilities

“…Caregivers articulated perceptions of negative mental health impacts for both them and their youth with a DDD, consistent with emergent COVID-19 findings pertinent to this demographic ( 4 , 41 ). Participants further communicated a depletion of services and constrained care coordination between their youth's healthcare providers, also mirroring trends in existing literature ( 54 , 67 ). Stressors encompassing physical health challenges during the pandemic, including gaps related to telehealth and services accessed through educational systems, have also been previously documented within this group ( 68 – 70 ).…”

Perceived social support and characteristics of social networks of families with children with special healthcare needs following the COVID-19 pandemic

“…Given that these programs are a valuable resource, patient organizations in Germany demand that they be strengthened ( 43 ). Further promising approaches include family guides for accessing community based social support and care coordination to enhance integration of medical and community-based supports for CSHCN ( 44 , 45 ).…”

Measure what matters: considerations for outcome measurement of care coordination for children with neurodevelopmental disabilities and medical complexity

“…In 2019, they urgently recommended governments coordinate efforts to effectively safeguard the rights of persons with disabilities. Furthermore, system fragilities in addressing CMC's needs gained greater prominence after the coronavirus pandemic, as NDD-MC were disproportionately impacted (7,8), the gaps in systems of care became more salient and the adequacy of financial supports was in question (6). As such, care coordination (CC) for CMC becomes increasingly important due to its role in addressing system fragmentation (9).…”