Families and children need psychosocial help getting through the pediatric cancer journey

Depression is not uncommon among children with cancer, and adverse side effects of defeating the cancer can raise the need for emotional support and services.

Counseling children with cancer has become more important in recent years for a simple reason.

It used to be that not many kids with cancer got to grow up.

Now they do.

That is great news, but it is not an easy path. Most families cope relatively well, but some families experience difficulty with depression or anxiety. Appropriate emotional and behavioral supports are critical to facilitate family coping during treatment and beyond.

“Early intervention for emotional and behavioral concerns is critical and can result in improved educational, social and emotional outcomes. We want to do everything we can to facilitate the coping abilities of the child and the family,” said Spencer Moorman, MSSW, LCSW, a social worker with a psychosocial oncology specialization and who works with patients at Norton Children’s Cancer Institute, affiliated with the UofL School of Medicine.

About 85% of children with cancer survive, thanks to advancements in treatment and detection.

During treatment, children with cancer spend months or years attending clinic visits and/or experiencing hospitalizations. They receive frequent medical procedures, including venipunctures, lumbar punctures, imaging tests and management of complex information and sometimes bad news. They may undergo surgery, radiation, chemotherapy or stem-cell transplantation.

For school-age children and adolescents, keeping up with schoolwork during treatment can be very challenging. Some of the treatments that help kids survive cancer — especially for those with brain tumors or blood cancers — can affect the central nervous system and risk ongoing neurocognitive difficulties.

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Most of the psychosocial team’s work involves the following categories — families who need emotional or behavioral help during or after treatment and children and teens at risk of cognitive effects, according to Sunnye Mayes, Ph.D., a pediatric psychologist devoted to helping kids at Norton Children’s Cancer Institute. Dr. Mayes also works with families to address additional areas of concern, such as a child’s distress at undergoing certain medical procedures, disturbances in sleep and issues with taking medications correctly.

“We want to be there to help them develop the coping skills that they need to get through this, make sure that they’re doing well. Most kids do pretty well and show amazing resilience,” Dr. Mayes said.

But there are children and families who experience significant adjustment difficulties, and her team is there to address those concerns, according to Dr. Mayes.

The whole family is affected by the cancer treatment process. Many families experience elevated financial stress and/or difficulty maintaining employment. Siblings may have difficulties with elevated distress, less time with parents and affected siblings, and less attention and access to typical activities.

“We are assessing, asking about these things and providing resources and services whenever we can. Most parents are pretty resilient and do well, but across numerous research studies there has been a significant portion of about 25% to 30% of parents who experience more significant distress. And we need to make sure that we are identifying those parents and providing services appropriately,” Dr. Mayes said.

The entire family experiences the effects of cancer treatment. At Norton Children’s Cancer Institute, we are working to address the needs of the whole patient and the whole family.