Early Experience from Families of Children with Medical Complexity during SARS-COV-2 Lockdown: Information to Drive System Change

Angeline Hassinger, parent and L.P.N., Jennifer Lail, M.D., FAAP

We describe reports on emergency home management by parents/families of children with medical complexity in the weeks following the declaration of the COVID-19 pandemic as a national emergency on March 13, 2020.  Families reported interruption of home care nursing, medication, formula and supply/equipment shortages, and tight infection control restrictions as early challenges. Persistence of the pandemic and “lockdown” for months prompted other concerns about family mental and physical health, postponed education and therapies, deferred preventive care, financial crisis, and insurance and advocacy challenges. Mitigating the risks of these gaps in care required intense family effort. It was complicated by the disrupted access to usual health system support and by the infectious risks incurred by opening the child’s home/residential center to outside help. Identification by families of the care gaps and struggles occurring during this pandemic will be important as future emergency and disaster planning and adapted policies and processes appropriately include this specialized and growing population of children. Acknowledging that families managed this crisis with limited help, we detail these challenges through the voice of one family’s experience during the pandemic.

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