Research Helps Parents Make Decisions About Their Child's Care—With Less Stress

Talking about having cancer is hard, from the first conversation about diagnosis and for each one after that—for both doctors and patients. Those conversations only get harder when a child is involved. That’s why Jennifer Mack, MD, MPH, a pediatric cancer doctor (oncologist) and researcher at Dana Farber/Boston Children’s Cancer and Blood Disorders clinic, is studying how to improve communication between parents, children, and doctors.

“When it comes to taking care of children with cancer, effective communication with both parents and their children is one of the most important things we do as providers,” said Mack.

Pediatric oncologists often bombard parents with lots of information when their child is diagnosed with cancer. And parents are asked to make a quick decision about treatment that will likely affect the rest of their child’s life.

Getting so much information in a short amount of time and making such a decision is very stressful for parents. Mack wanted to better understand what that experience was like for parents. Using what she already knew, her goal was to find ways healthcare providers might reduce some of the stress for everyone involved.

"Navigating relationships with distraught and overwhelmed parents can be as complex as treating the disease itself," Mack said. "Yet, doctors have little guidance in how to forge these relationships." She's been compiling evidence to guide these communications.

Mack’s research often involves surveys with parents and their child’s oncologists, and her ACS grant has helped fund several surveys. In one study, Mack learned that 92% of parents want information about how their child’s cancer treatment may limit them in the future, even though almost half of them found that information very upsetting.

In another study, she learned that 1 in 6 parents regretted decisions they’d made about their child’s care. Their decisions might have been agreeing with the treatment the doctor offered or choosing between 2 options, such as between a clinical trial and standard treatment.

One reason Mack thinks parents may later regret their choice is because they didn’t understand the long-term risks of the treatment.

“We talk about the possible side effects of each treatment option, but we don’t necessarily step back and talk about what the child’s life will be like long after any of the treatments,” Mack said. 

Though she wasn’t surprised by the parents’ survey responses, she did find them eye-opening. “If 1 in 6 parents regret their decisions, that means that every day I’m in clinic, I may be seeing 1 or 2 parents who are having these feelings that I’m not aware of.”

She wasn’t the only pediatric oncologist who was not aware of parents’ feelings and preferences. In another study, she and her colleagues surveyed 372 parents and their child’s oncologists at two pediatric hospitals within 12 weeks of their child’s diagnosis. The survey asked parents about their preferred and actual roles in decision making.

Survey results showed that oncologists only recognized the level of involvement parents desired about half the time.

Most parents (64%) preferred to share decision making with the oncologist. But 34% of parents were either more or less involved in decision making than they wanted to be. The ones who played a bigger role than they wanted (14%) were more likely to regret their decision.

”We learned that how well parents communicate and get along with their child’s doctor has a big influence on how confident they are about previous decisions,” she said.

The problem is that pediatric oncologists get little formal training in how shared decision-making with parents works best.

“While we test treatments by putting them through rigorous clinical trials,” Mack said, “when it comes to how to communicate effectively, we often learn by trial and error.”

Mack’s research findings could one day improve the way oncologists are trained, which could improve outcomes for patients and families. “Our fellows and residents are so hungry to do the right thing. They really want that guidance.”