Supporting Families Through Pediatric Cancer

For pediatric psychologist Carolyn Bates, PhD, understanding how family life is upended during a child’s cancer treatment has become her life’s work, revealing the impact of disrupted routines on the well-being of both children and their families.

Trained as a clinical psychologist, Dr. Bates initially explored how various environmental contexts, like school and neighborhood, influenced children's health. As she delved deeper into her research, the family context emerged as the most powerful factor, especially for young children.

“The family is such a potent influence on kids’ psychological and physical health,” she explains. 

The Impact of a Diagnosis

This led her to focus on how family dynamics may change when a child is diagnosed with cancer. Dr. Bates’ research journey began during her predoctoral internship and postdoctoral fellowship at Children’s Mercy. It was there that she noticed significant disruptions in families’ daily routines, such as the ability to sit down for family mealtimes and keep a regular sleep schedule, when facing a new pediatric cancer diagnosis.

“Family routines often get disrupted when a child is diagnosed with cancer, and those changes can have a ripple effect, not only to the child but also parents and siblings,” she says.

Her observations inspired research aimed at understanding how these disruptions may affect children’s emotional and behavioral health. Funded by a pilot grant from the Children’s Mercy Cancer Center, she found that families struggled to maintain routines, particularly around meals, bedtimes and schoolwork for children undergoing cancer treatment. This led her to explore a crucial question: How do these changes in family dynamics impact the child’s emotional and behavioral well-being?

Dr. Bates’ work took another step forward with funding from the Masonic Cancer Alliance Partners Advisory Board to study family adjustment and children’s emotional symptoms during the first year of cancer treatment. The results were revealing. All families experienced some changes in their routines, but those who had the hardest time keeping consistent practices, like age-appropriate chores, often had children with more outbursts, defiance and trouble coping with medical treatment.

To address these challenges, Dr. Bates is developing an intervention to help families cope and adjust during the first year of pediatric cancer treatment. Supported by a National Cancer Institute Career Development Award, the program focuses on helping families maintain healthy family practices throughout the treatment process. The program aims to promote both short- and long-term psychological and physical health for the child and their family.

Building Resilience

“We’re trying to help families build resilience early in the treatment process and set them up for long-term success,” Dr. Bates explains. “If we can support them in maintaining positive family practices, like healthful routines, we may be able to mitigate some of the negative emotional and behavioral effects of cancer treatment on children.”

One study participant, whose daughter is currently receiving cancer treatment, remarked that therapy, as well as a strong local support system, has been beneficial for her entire family.

“I believe the mental devastation of childhood cancer for any family requires professional guidance,” the participant says. “Children's Mercy connected us with one of their child psychologists who specializes in children and siblings affected by cancer. There will be a long road to recovery for all of us, and we will continually put in the work to heal.”

Future Plans

As her research continues, Dr. Bates plans to refine and expand the intervention through clinical trials, with hopes of eventually conducting a larger, multisite study. Her team also plans to conduct a cultural and language adaptation of the intervention for Spanish-speaking families.

“Childhood leukemia treatment can last two to three years, and during that time, families need support in maintaining healthy habits,” she says. “By fostering these habits early on, we hope to improve survivorship outcomes for children and promote positive family dynamics beyond treatment.”