Nemours Children’s Health cancer research shows parents and providers may disagree on how to prioritize support
The Emotional Side of Childhood Cancer Care
When a child is diagnosed with cancer, parents and care teams share the same goal: making sure the child gets the best care possible.
But pediatric cancer care goes beyond treatment. Children and families facing a cancer diagnosis often need psychosocial resources like mental and emotional support. New cancer research from Nemours Children’s Health shows that while both parents and healthcare providers agree that these resources are important, they don’t always agree on which ones should come first.
Inside the Research: Exploring Priorities in Family Support
In 2015, experts and cancer advocates, including Nemours Children’s researchers, published the first Standards for the Psychosocial Care of Children with Cancer and their Families. These guidelines define best practices for this area of pediatric oncology care and how to best support the mental and emotional health of children and their families facing a cancer diagnosis.
Kimberly Canter, PhD, senior research scientist with the Nemours Center for Healthcare Delivery Science, recently published a research letter in JAMA Pediatrics. Her work explores which types of support parents and providers see as most important. Here, she shares what her team found:
Why is it important to look at how parents and providers rank the standards of psychosocial care?
Dr. Canter: We’ve learned from our work with patient and family advocacy partners that parents, caregivers, and providers don’t always agree on what’s most important. When families feel their needs are being met, they’re more satisfied with care and their children tend to do better. Understanding where parents and providers agree, and where they don’t, opens the door to better communication and collaboration during a child’s cancer journey.
Where Parents and Providers Agree (and Where They Don’t)
What did both groups agree on?
Dr. Canter: Parents and providers saw the same three areas as top priorities: Assessing families’ emotional and social needs, offering emotional support and counseling, and helping families manage financial stress.
These shared priorities weren’t surprising. As more children survive cancer, there’s a growing focus on long-term emotional and financial well-being. It’s encouraging to see providers recognizing how financial stress affects families because parents have felt that pressure for a long time.
Let’s talk about how their views differ. What did parents see as most important? Why?
Dr. Canter: Parents placed more importance on mental health support for themselves, care for siblings, and monitoring treatment side effects that affect thinking and behavior. They’re living this experience and telling us how emotionally demanding it is to watch a child or a sibling go through cancer treatment.
Some pediatric cancer treatments cause neurotoxicity that affects a child’s thinking, behavior, or mood. Parents often said these changes were unexpected or not talked about enough, since they don’t directly relate to curing the cancer. This was one of the biggest differences — parents listed it among their top five concerns, while providers ranked it near the bottom.
What did providers prioritize more? Why?
Dr. Canter: Providers placed more value on education and guidance, making sure families understand what to expect after a cancer diagnosis. They also emphasized palliative care and end-of-life care.
As clinicians, we want to make sure families have all the information they need about pediatric cancer treatment, side effects, and next steps. It’s also important to explain that palliative care isn’t just for end-of-life situations. It’s about helping children feel better, manage pain, and maintain quality of life throughout treatment. We’re taking a more holistic approach to cancer support by caring for all aspects of the child’s well-being. We want families to see it as part of whole-child care, not just end-of-life care.
Working Together to Improve the Patient and Family Experience
How might these differences affect the patient experience?
Dr. Canter: If providers and parents don’t fully understand each other’s views, there may be frustration and breakdowns in communication. Recognizing these differences helps everyone work together to better support families.
This research involved Nemours Children’s unique partnership with parents who have become strong patient advocates. How did they contribute?
Dr. Canter: The role of our advocates really can’t be overstated. We worked with Momcology and Mattie Miracle, organizations founded by parents who’ve been through the pediatric cancer diagnosis journey themselves. They helped us connect with families and convey our legitimacy — that we are a research team that truly cares about the patient experience. Their input made the research stronger and helped our findings truly speak to what families go through.
Kimberly Canter, Ph.D., is a Senior Research Scientist in the Nemours Center for Healthcare Delivery Science
About Nemours Children’s Health
Nemours Children’s Health is one of the nation’s largest multistate pediatric health systems, which includes two freestanding children’s hospitals and a network of more than 70 primary and specialty care practices. Nemours Children’s seeks to transform the health of children by adopting a holistic health model that utilizes innovative, safe, and high-quality care, while also addressing children’s needs well beyond medicine. In producing the highly acclaimed, award-winning pediatric medicine podcast Well Beyond Medicine, Nemours underscores that commitment by featuring the people, programs, and partnerships addressing whole child health. Nemours Children’s also powers the world’s most-visited website for information on the health of children and teens, Nemours KidsHealth.org.
The Nemours Foundation, established through the legacy and philanthropy of Alfred I. duPont, provides pediatric clinical care, research, education, advocacy, and prevention programs to the children, families, and communities it serves.
