Family caregivers of people with disabilities are experiencing isolation, anxiety and other ill-effects from the coronavirus pandemic in far greater numbers than others, according to new research.
Findings from a handful of new surveys are trickling out looking at how families of those with disabilities across the country are faring during these unprecedented times and by and large, the picture isn’t pretty.
Caregivers are more likely to report that their health and finances are worse since the pandemic started, that they are experiencing anxiety and depression and are worried about getting COVID-19 than those without caregiving responsibilities, according to a new report from the National Rehabilitation Research and Training Center on Family Support at the University of Pittsburgh.
Researchers at the center surveyed 619 family caregivers and 2,933 non-caregivers, mostly in the Pittsburgh area, in April and May about how the pandemic influenced their lives.
“The results were what I expected, but also more intense than what I expected,” said Scott Beach, co-director at the center who noted that the findings were surprisingly consistent for caregivers of various ages, education and income levels.
Among caregivers, the Pittsburgh researchers found that 63 percent had seen an increase in their responsibilities for the family member they support. More than half reported that caregiving has become more emotionally difficult because of COVID-19.
A separate report from the University of Connecticut’s Collaboratory on School and Child Health looking more specifically at the experiences of caregivers of children with developmental disabilities had similar findings.
Researchers surveyed 407 caregivers across the country in April, 225 of whom had children with autism and attention deficit hyperactivity disorder and the remainder had typically-developing kids. While all caregivers said their worries had increased and their ability to participate in self-care activities decreased due to the pandemic, their sources of stress varied.
Caregivers of typically-developing children reported struggling with their inability to see friends or family, according to preliminary findings from the study. By contrast, those whose children have developmental disabilities cited a much greater caregiving burden, as well as depression and anxiety.
“Initial findings confirmed that all caregivers are experiencing challenges as a result of COVID-19, and likely need support for their own well-being as the pandemic continues,” the Connecticut researchers wrote in their report. “However, the negative impact of COVID-19 on caregivers of children with DD is significantly greater.”
Caregivers of those with developmental disabilities were more likely to report having less support for their child’s educational goals, trouble accessing child care, loss of employment or reduced work hours as well as increased financial strain.
Sandra Chafouleas, co-director of the Collaboratory on School and Child Health and one of the researchers behind the survey, said that a detailed report on the findings is currently being reviewed for publication in a scientific journal and a follow-up survey is being conducted to see how families have managed six months into the pandemic.
“I think the results of our initial study provide confirmation — from a research standpoint — regarding the many news reports that we have seen about the increased expectation, without additional resources, faced by caregivers of children with disabilities,” Chafouleas said. “The burden is real, and taking not only a toll on their children but caregiver well-being.”
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