Medical Technology

Families afflicted by life-threatening diseases require help

Parents and siblings of children who experience life-threatening illness use nearly twice the amount of healthcare services for both mental and physical conditions as families unaffected by such problems, a new study has found.

Experts said the findings, published in JAMA Network Open, should help guide the allocation of healthcare and related resources, such as assistance with transportation, insurance, and school, as well as emotional support to these families.


Dr Chris Feudtner

Previous research has revealed physical and mental distress in families of children with a life-threatening condition, including self-reports of lower resilience and greater symptoms of posttraumatic and emotional distress, according to Chris Feudtner, MD, PhD, MPH, the director of research for the Justin Michael Ingerman Center for Palliative Care at Children’s Hospital of Philadelphia, and his colleagues. Other reported issues include higher anxiety, more health problems, fewer healthy behaviors, more unhealthy behaviors, sleep disturbances, and lower quality of life; however, most studies on this topic have been small and have focused on families of children with a single condition, the researchers say.

For the new study, the researchers identified 6909 children with life-threatening conditions — substantial prematurity, critical congenital heart disease, cancer, or a problem resulting in severe neurologic impairment — and 18619 control children without such issues. The median age of the study population was 6 years (range, birth to 19 years). The mean age of the parents was 40 years.

The researchers also identified 7664 siblings of children with life-threatening conditions and 18042 control siblings, matching each case with up to four controls. The parent population included 11586 case parents and 31771 control parents. All the families in the study had commercial insurance coverage from a single carrier.

The primary outcome was a composite of the rates of healthcare encounters, physical and mental health diagnoses, and prescriptions for medications to treat physical and mental health using a regression model.

Overall, mothers of children with life-threatening conditions had higher rates of the composite outcome compared with control mothers (incident rate ratio [IRR], 1.61), as did fathers (IRR, 1.55). Siblings of children with life-threatening conditions also had higher rates of the composite outcome compared with siblings of children without such health problems (IRR, 1.68 for sisters; IRR, 1.70 for brothers), according to the researchers. Within the case families, the composite outcome rates for mothers were 44% higher than those for fathers, and the composite outcome rates among sisters were 11% higher than those among brothers.

In addition, overall use of healthcare services was 83% higher among case families of children who died compared with control families.

The study raises questions of whether increased physical and mental health issues among family members of children with life-threatening conditions can be prevented or mitigated, the researchers write. Care for these families should include not only physical and mental health care but also both support with daily living and emotional assistance, such as psychotherapy and stress reduction, they say.

“Although more research is warranted to better understand the mechanisms underlying these findings, interventions for parents and siblings of children with LTCs [life-threatening conditions] that aim to safeguard their mental and physical well-being appear to be warranted,” they conclude.

“The impact that having a child with a life-threatening illness has on the health and well-being of parents and siblings remains greatly underappreciated,” Feudtner told Medscape Medical News. “This is one of life’s most daunting challenges that a family might face.”

Feudtner explained how he was not surprised by the findings. “I have had the privilege over the past 25 years to take care of many children with life-threatening illness, and to get to know their parents and siblings well,” he said. “While these remarkable families often display amazing resilience, it has always been clear to me how much mental and physical strain this situation places on these family members, and I have watched many people suffer,” he added. “These were the observations that motivated us to conduct this study and determine whether, and to what degree, parents and siblings suffered negative physical and mental health impacts,” Feudtner said.

“An important point is that mothers and fathers both had negative impacts, and so did sisters and brothers, to roughly an equal degree; everyone is affected,” said Feudtner.

Feudtner described the take-home message of the study findings as a call to action to doctors and health systems “to recognize how at risk parents of children with life-threatening illness are for increased physical and mental health conditions, and to proactively work with these parents to try to meet their needs and to promote their well-being.” However, “this is easier said than done, since these parents are pouring their heart, soul, and all their energy and time into caring for their ill child, but this is the task, and the same kind of task is true for the sisters and brothers of these ill children,” said Feudtner.

More research is needed to find effective ways to meet the needs of family members of children with life-threatening illnesses, Feudtner said. Interventions for providing physical and mental health care should be studied, he said. Other interventions for these families need to focus on the financial and social problems such as managing large medical bills, leaving a job to care for an ill child, or strugging with feelings of isolation, both for parents and for siblings, he said.

Results Highlight Need for Comprehensive Care

Increasing evidence shows the long-term mental and physical impact on family members of a child with a life-threatening condition, but the implications of these findings have not been explored, write Lauren M. Yagiela, MD, a pediatrician at Children’s Hospital of Michigan, in Detroit, and Mary E. Hartman, MD, MPH, of St. Louis Children’s Hospital, in an invited commentary.

The researchers found higher rates of healthcare diagnoses and use by family members of children with life-threatening conditions compared to controls, as well as more use of healthcare in families of children with chronic illness and debility, Yagiela and Hartman write.

“The results of this analysis suggest an association of pediatric life-threatening conditions with family members’ mental and physical health beyond the normative US family experience, which has many baseline stressors,” they note.

As a result, they add, the findings include the need for a comprehensive approach to mental and physical health of the family unit, in addition to meeting the healthcare needs of the seriously ill child. “Children with life-threatening conditions depend on their parents to manage both their physical and their emotional health needs, but parents providing this care can experience marked traumatic stress from fearing their child may die and watching him or her struggle with illness while managing accompanying logistical and financial stress,” they write.

“The study is a call to action for all who care for children with life-threatening conditions because there must be a clinical and research paradigm shift from simply considering the child with [such conditions] to considering the entire family unit surrounding that child, whose health and well-being as an entire unit will be essential to the health and well-being of each of its members,” they added.

The study was supported by the Cigna Foundation, through grants to lead author Feudtner. One study coauthor disclosed grants from the Cigna Foundation, and another is an employee of Cigna. Hartman and Yagiela reported no financial conflicts of interest.

JAMA Netw Open. Published online December 20, 2021. Full text

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