Study sheds light on challenges faced by caregivers of children with genetic conditions

May 10 2024University of Colorado Anschutz Medical Campus When it comes to improving the lives of children with genetic conditions, medical research often focuses solely on the children. But there is an equally important population in need of research that a faculty member at the University of Colorado Department of Medicine is highlighting -; the caregivers.

"The health of these caregivers matters," said Creel, who is also involved in the Adult and Child Center for Outcomes Research and Delivery Science . "These things are all connected." "That's attributable to both the complexity of their needs and a very limited specialized workforce in the area of genetic medicine," Creel said.

Since they had several years of data to analyze, Creel's team decided to also look at the prevalence of children with genetic conditions. They estimated that 4.4% of children in the U.S. have a genetic condition -; roughly 0.5% higher than what the 2021 study showed. The research also found increased odds of leaving the workforce for caregivers of Black children, American Indian children, children who receive care from others at least 10 hours a week, and children who needed care but did not receive it. On the flip side, caregivers with college degrees and those who are married had decreased odds of leaving the workforce.

Why this research matters Understanding the impact of caregiving on employment and caregivers' health matters for a multitude of reasons, Creel said.

Blood Children Cystic Fibrosis Down Syndrome Fibrosis Genetic Health Care Medical Research Medicine Mental Health Syndrome

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