Severe Illness in a Child Takes Big Toll on Parents, Siblings: Study

December 23, 2021
Robert Preidt

When a child has severe health problems, the suffering often extends to the entire family, new research finds.

Using data from a single health insurance provider, the study authors assessed nearly 7,000 children with life-threatening conditions and their families, and compared them to a control group of more than 18,600 children without a life-threatening condition and their families.

The four types of life-threatening conditions studied were: very premature birth; critical congenital heart disease; cancer; and severe neurological impairment.

The researchers compared rates of health care encounters (inpatient stays, outpatient visits, telephone consultations), physical and mental health diagnoses, and subsequent medication prescriptions in the two groups of families.

In families of a child with a life-threatening condition, those rates were 61% higher among mothers, 51% higher among fathers, 68% higher among sisters and 70% higher among brothers, compared to families in the control group, the findings showed.

"Though limited to four specific life-threatening conditions, our study provides critical empirical data specifically measuring the negative impact felt by family members," said study senior author Dr. Chris Feudtner, director of research at the Center for Palliative Care at Children's Hospital of Philadelphia (CHOP).

"We hope that this study brings enhanced awareness of this largely unaddressed problem and starts moving us towards effective responses," Feudtner said in a CHOP news release.

The study was published online Dec. 20 in JAMA Network Open.

"As clinicians caring for children with a variety of life-threatening conditions, members of our research group have long known, by bearing witness, that many of the parents and siblings of our patients are adversely affected by the stress imposed due to presence of a life-threatening condition in the family," Feudtner added.

"We hope that this study provides the foundation for more work that offers critical interventions and support for families to help stabilize their mental and physical well-being during an incredibly trying time in their lives," he noted.

More information

For more on how a serious condition in a child can affect a family, go to the American Academy of Pediatrics.

SOURCE: Children's Hospital of Philadelphia, news release, Dec. 20, 2021

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