Family members of children with serious pediatric illness have elevated needs for physical and mental health care, according to a new study conducted by The Children’s Hospital of Philadelphia in partnership with Cigna. The findings were published in the Journal of the American Medical Association.

“The goal of the study was to think through how we can better support family health with programming, and there were a few key findings,” said Michael Manocchia, health and consumerism data science lead, and senior scientist at Cigna. “The main finding was that family members of a child with a life-threatening condition had higher rates of health care encounters, more diagnosed conditions and more prescriptions.”

The research, which looked at 6,909 children with life-threatening illnesses and their families, and compared them to 18,619 children without serious illnesses, and their family members, also found that mothers are impacted harder when dealing with a child that has a life-threatening illness, more so than fathers. This finding cements the notion that women caregivers experience a greater toll on their well-being than their male counterparts – a topic that has garnered much attention throughout the COVID-19 pandemic. Separate Cigna research from earlier this year finds that women have been disproportionately affected by the pandemic, and while they recognize the importance of self-care and mental health, they often struggle to prioritize it, citing a lack of capacity and resources.

“The burden of having a child with a life-threatening illness has the greatest impact on the mothers in the family and their overall health and well-being,” Manocchia said.

The gender component goes beyond parents to siblings, Manocchia said. “The study found that both mothers and sibling sisters experience a larger impact on their health status when dealing with a life-threatening condition in the family,” he said. “We thought children would be impacted similarly regardless of their sex. However, we saw that the female effect was impacting children as well.”

The study also found that families dealing with a life-threatening condition see broad types of mental health challenges and physical health issues and have greater odds of a trauma diagnosis. The implications for medical and behavioral health providers is clear: Family members need to be assessed when a child has a life-threatening illness, and families must stay connected to their own doctors during such a difficult time, Manocchia said.  

When asked about the implications that the new research might have on employers, Cigna’s Manocchia said that it points to the need for organizations to move away from thinking about individual health and well-being and instead emphasize whole family health. For plan sponsors, he said, the need for creating a workplace environment that supports the mental and physical health of employees and their families should be paramount.

What should medical providers, employers, and others do with the information learned during this study? Manocchia says the negative effect on health status likely isn’t limited to families facing a child’s life-threatening illness. “I believe this needs further study in a host of conditions, especially when they are serious,” he said, noting that services and support are usually patient-based, not family based. “We don’t typically look at the family’s health holistically, and this is something the industry could improve upon.”

Importantly, this study signals to families of children with chronic and life-threatening conditions to prioritize their own health as well. Don’t skip annual appointments and ask for mental health screenings when faced with health crises in the family, Manocchia said, suggesting that a primary care provider is always a good place to start.