Caregivers of Children with Genetic Conditions Face Challenges, Need Support

University of Colorado researcher Liza Creel's study reveals that 12.6% of caregivers for children with genetic conditions stopped working due to caregiving responsibilities. Caregivers of these children reported fair or poor physical and mental health at a higher rate than other caregivers.

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Bijay Laxmi
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Caregivers of Children with Genetic Conditions Face Challenges, Need Support

Caregivers of Children with Genetic Conditions Face Challenges, Need Support

University of Colorado researcher Liza Creel is shedding light on the often-overlooked population of caregivers for children with genetic conditions. Her research highlights the significant impact caregiving has on parents' employment and health, emphasizing the need for policy and clinical practice changes to support these caregivers.

Why this matters: The well-being of caregivers has a direct impact on the quality of care provided to children with genetic conditions, and neglecting their needs can have long-term consequences for the entire family. Moreover, supporting caregivers can have economic benefits, as the loss of productivity and wages due to caregiving responsibilities can be substantial.

According to 2021 survey data, approximately 3.9% of children in the United States (nearly 3 million) have agenetic condition, which is likely an underestimate. Caregivers for these children provide a range of support, including care coordination, physical assistance, and navigation of the education system. This extensive caregiving can be time-consuming and affect their participation in the labor market.

Creel's research team conducted a retrospective analysis using data from the 2016-2021 National Survey of Children's Health. They found that 12.6% of caregivers for children with genetic conditions stopped working due to caregiving responsibilities, compared to 8.5% of caregivers for children with other special health care needs. "We need to think very broadly about how to support not just the kids, yes, that matters, but also the people caring for those kids. I want to do work that informs policy to support caregivers and to help families,"said Creel.

The study also revealed that 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 had increased odds of leaving the workforce. In contrast, caregivers with college degrees and those who are married had decreased odds of leaving the workforce.

Furthermore, caregivers of children with genetic conditions reported fair or poor physical and mental health at a higher rate than other caregivers. "The health of these caregivers matters... These things are all connected,"Creel emphasized.

The research has implications for health policy, as the Administration for Community Living released a national strategy to support family caregivers in 2022, citing the financial, physical, and emotional costs of caregiving. One study estimated that family caregivers lose over $500 billion in wages every year due to caregiving, and employers experience a financial loss as well.

Creel's research underscores the importance of understanding the impact of caregiving on employment and caregivers' health, which has implications for both health policy and clinical practice. "Understanding the impact of caregiving on employment and caregivers' health matters for a multitude of reasons,"Creel stated. As policymakers and healthcare providers work to address these challenges, supporting the well-being of caregivers will be crucial for improving outcomes for children with genetic conditions and their families.