Sara Pearson remembers describing to a mental health worker the sadness and fear that overcame her daily.
The year before, her infant daughter, Olivia, had been diagnosed with cystic fibrosis, a congenital anomaly that would impact every day of her life and likely lead to other serious conditions, including Type 1 diabetes and intestinal problems. Early on, Olivia failed to gain weight and thrive; she also struggled to breathe.
Pearson faced an unrelenting schedule of treatments and medicines, including twice-daily compression therapy to loosen the mucus in Olivia’s lungs and making sure she took enzyme replacement pills whenever she ate anything.
The day-to-day struggles were combined with the stress of knowing her daughter would never lead a normal life — and neither would she.
As Olivia grew older, Pearson related on a psychotherapist more and more. She and her husband started marriage counseling after their doctor warned them that 9 out of 10 parents of a child with cystic fibrosis divorce. Now 27, Olivia’s health challenges and care needs continue.
Mothers in need of care
Pearson’s experience isn’t unusual, according to a recent study by researchers at Stanford and Denmark’s Aarhus University. Mothers of chronically ill children tend to make greater use of health care services — particularly psychotherapy — to help them cope with the daily challenges of caregiving.
The impact of caring for a chronically ill child extends beyond the mothers’ day-to-day struggle. “We’re seeing just the tip of the iceberg,” said Kyung Mi Kim, PhD, a research fellow at Stanford’s Clinical Excellence Research Center. She and Nirav ShahMD, a senior scholar at the center, were co-lead authors of the studypublished in December in PLOS ONE.
“Our ongoing evaluation of employment outcomes indicates that the long-term physical and psychological challenges of caregiving take a toll on caregiving mothers’ health and can force them to leave the workforce,” Kim said.
CERC director Arnold Milstein; CERC affiliated scholar Eyal Cohen, MD, of the University of Toronto; and CERC senior adviser Henrik Toft Sørensen, MD, PhD, of Denmark’s Aarhus University, were joint senior authors. Pearson, who lives in San Rafael, California, was not part of the study nor did she receive mental health treatment at Stanford. Her daughter was not treated at Stanford Health Care as a child, but has received cystic fibrosis care at Stanford as an adult.
The researchers said they hope that a better understanding of the challenges faced by mothers of chronically ill children could lead to interventions that protect their physical and mental health.
These could include longer paid maternity leave to support mothers’ postpartum recovery and paid leave for child care when the caregiving burden is high. Such interventions could help a large number of mothers, as 2% to 3% of all babies born every year in the United States have congenital anomalies, which include Down syndrome and heart defects.
Research examining the use of health care services by mothers of chronically ill children has been limited because of a lack of longitudinal data. For this study, the researchers turned to Denmark, one of few countries to rely on its national birth and medical registries to track health care services use over decades.
Because Denmark’s national health care system fully covers primary, specialist, inpatient and mental health services, researchers were able to examine the long-term effects of caregiver burden without considering whether participants had access to care or the ability to pay for services, which can be factors in the US health care system.
The sample included 23,927 mothers in Denmark who gave birth to infants with major congenital anomalies between 1997 and 2017, and a control group of mothers of unaffected infants. The births had been recorded in the Danish medical birth registry.
The researchers learned that mothers of chronically ill children up to age 6 used inpatient services 39% more than other mothers, and mothers of chronically ill children 7 to 13 years old used 14% more inpatient services.
Mental health care use was highest for mothers of affected children from 7 to 13 years old: These mothers used 22% more mental health services than mothers of unaffected children, and this percentage was even higher for mothers at lower income levels, whose use of psychotherapy was 59% higher when the child was 7 to 13 years old.
The greater use of health services translates to a significant increase in cost: Per capita health care spending in Denmark was $5,568 in 2019, meaning a 1% increase in health care utilization would lead to an increase of $325 million annually for the country of 5.8 million people. Applied to the United States, a similar increase in health care use would have an even greater impact, considering that twice as much per capita is spent on health care in the US than is spent in Denmark.
The increase in maternal use of mental health services as children grow older comes as no surprise to Pearson, particularly if the child goes to school. Suddenly, after managing every aspect of the illness, the mother has to step back, she said, and that is terrifying.
“From 0 to about 6 years old, you’ve learned that the most important thing to this child’s life is for you to be in complete control — of what they eat and everything they do,” she said. “Then they go to school, where you are no longer in charge. It’s very difficult to walk the line between protecting them and wanting them to have as normal a life as possible.”
A look at employment
Tea PLOS ONE paper is the first of three studies by researchers from the center who are examining the impact of caregiving on mothers.
A paper expected to be published this summer will examine the effect on mothers’ employment — a familiar theme during the COVID-19 pandemic, as the burden of caring for family members has fallen largely on women, forcing many to leave their jobs. A third study will examine the collective societal impact of mothers caring for chronically ill children.
“Developing care plans to provide long-term support and reduce financial and time burdens is critical,” Kim said. “This is going to have serious long-term health and labor force implications.”
Other Stanford researchers who contributed to the study are CERC senior scholars Venus Wong, PhD, and Sarah Rosenbaum, MD; and former graduate student Eli Cahan.
The study was funded by CERC.