CCIS Spotlight: Caregivers

The COVID Community Impact Survey (CCIS) Caregivers Spotlight highlights the experiences and inequities faced by caregivers during the pandemic.

Summary of key findings

• For the purpose of this survey, the term caregivers includes both parents of children and youth with special healthcare needs (PCYSHN) and caregivers of adults with special needs. 
• Caregivers provide care to people who need some degree of ongoing assistance with everyday tasks on a regular or daily basis. While caregiving is meaningful, it is also challenging, and changes in availability of respite care during the height of the pandemic, fear of COVID-19 infection, and increased social isolation had a significant effect on caregivers during the pandemic.   
• Certain groups of caregivers were more likely to be affected by job loss, experience economic insecurity, and experience delays in healthcare. Caregivers with lower incomes, caregivers of color, caregivers under the age of 45, caregivers with disabilities, LGBTQA+ caregivers, and caregivers who speak a language other than English had varying greater socio-economic and health needs.   
• Caregivers were more likely to report job loss compared to non-caregivers/other parents. 
• More than one in three parents of children and youth with special healthcare needs lost their jobs, reduced their hours, or took leave during the pandemic. 
• Nearly one in five caregivers of adults lost their jobs during the pandemic. 
• Caregivers were more likely to be concerned about obtaining basic needs, such as food and groceries, compared to non-caregivers/other parents. Among caregivers, certain groups including parents of children and youth with special healthcare needs (PCYSHN) aged 25-24, PCYSHN of color, and caregivers of adults who speak a language other than English reported higher levels of concern. 
• Family caregivers are experiencing increased mental and behavioral health needs and may face significant barriers accessing healthcare. Caregivers, especially caregivers with disabilities and LGBTQA+ caregivers, were more likely to report 3+ PTSD reactions during the first 6-8 months of the pandemic, compared to non-caregivers/other parents. 

Spotlight slides and webinar

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Additional Resources

CCIS Webinar Slides: Caregivers of Adults with Special Needs

CCIS Webinar Slides: Parents of Children & Youth With Special Healthcare Needs