The Pandemic’s Impact on Caregivers of Children With Special Health Care Needs

Frequency of California Caregivers Feeling Overwhelmed While Providing Medical and Therapeutic Care for Children With Special Health Care Needs, March to November 2020

Families who have a child with a special health care need (CSHCN) have experienced substantial challenges during the coronavirus pandemic. CSHCN have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition. They require health and related services of a type or amount beyond that required by children generally. These requirements may add strain to daily family functioning.

The questionnaire, Family Experiences During the COVID-19 Pandemic, offers a look at how families coped with caring for their CSHCN during the pandemic. To collect and share information about these children and their needs, a section of the questionnaire is dedicated to asking about experiences specifically among families with CSHCN. In addition, all questionnaire findings on KidsData compare responses of caregivers with at least one CSHCN to those without.

Between March and November 2020, more than half of caregivers sometimes, fairly often, or very often felt overwhelmed by the day-to-day demands of providing medical or therapeutic care for their CSHCN between March and November 2020. Notably, in the week prior to responding to the questionnaire, 14% of caregivers had to provide medical care that would normally be provided by others.

The Lucile Packard Foundation for Children’s Health invests in creating a more efficient system that ensures high-quality, coordinated, family-centered care to improve health outcomes for children and enhance quality of life for families. A series of webinars and publications supported by the foundation share strategies that state Medicaid agencies have implemented during the pandemic, including expanded access to services for CSHCN. Additional resources for families, caregivers, state agency staff, and advocates offer information about caring for CSHCN during the pandemic.

Webinar Posted

The webinar and slide deck for “Family Experiences During COVID-19 Pandemic Data” are now posted! On April 29, the California Essentials for Childhood (EfC) Initiative hosted a webinar that featured findings from wave one of the Family Experiences During COVID-19 Pandemic questionnaire. Drs. Robert Sege from the HOPE Project at Tufts Medical Center and Lori Turk-Bicakci from the KidsData program at PRB shared both national and California-level findings about child and caregiver experiences.

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