Helping families of pediatric cancer patients with their emotions (Part 2 of 3)

Details on the second five of 15 standards for addressing the emotional effects of pediatric cancer and its treatment

Addressing the emotional effects of cancer and its treatment on children and young adults can improve outcomes and help manage adverse effects of treatment.

Norton Children’s is presenting a three-part series drawing from a recent continuing medical education opportunity with specialists from Norton Children’s Cancer Institute, affiliated with the UofL School of Medicine. The presenters were Sunnye Mayes, Ph.D., ABPP, a hematology/oncology psychologist and director of psychosocial services for pediatric hematology/oncology for Norton Children’s Cancer Institute; and Spencer Moorman, MSSW, LCSW, a licensed clinical social worker and project coordinator.

Part 2 addresses the second five of 15 evidence-based standards for care and encourages using a multidisciplinary team of caregivers to address the needs of children and families. Read about the first five standards.

Implementing standards 6 through 10

  1. Psychosocial care for parents of children with cancer

While most parents exhibit resilience after their child receives a cancer diagnosis, up to 30% have been shown to experience prolonged distress. This presents an opportunity to address the psychological and emotional needs of the parent.

“Parent distress has a significant effect on the child functioning,” Dr. Mayes said. “And we want to make sure that we are doing what we can to support families in that experience.”

How to implement: Ensure access to psychosocial care and intervention is available for adults as well as children. Frequent reassessment is also key, as some families who initially test in the category of highest risk stay in that category.

  1. Anticipatory guidance and psychoeducation

Providing anticipatory guidance and education to families is essential to help alleviate distress and prepare for navigating a complex cancer trajectory. Ensuring that the family feels adequately prepared for and fully understands complicated information ahead of treatments and surgeries is crucial. It’s also important to provide developmentally appropriate guidance to the patients.

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“It’s hard to take in all this information when you are really distressed, particularly at the beginning of treatment and if there are changes in disease status,” Dr. Mayes said. “So important information may need to be repeated, and we want to make sure that families are fully understanding what we’re trying to say.”

How to implement: The entire medical team can work together to provide families with psychoeducation, information and guidance related to disease, treatment, procedures, hospitalization and more at every step of oncological care.

  1. Procedural preparation and support

Set appropriate expectations for children and their families. Giving children who have cancer information in advance of procedures can decrease distress, increase coping and facilitate cooperation.

“We want to make sure that the family has an idea of what to expect, as well as the child … in developmentally appropriate terms,” Dr. Mayes said.

How to implement: Make use of child life specialists to provide children with explanations of surgeries and other medical information. Provide psychological intervention for invasive medical procedures to help create distractions and promote relaxation.

  1. Providing children and adolescents opportunities for social interaction

Children with cancer are more likely to miss out on typical social opportunities, like school. If their blood counts are low, social interaction puts them at higher risk for infection.

“Having pediatric cancer is a very socially isolating experience, so we want to do as much as we can to help facilitate social interactions among our patients,” Dr. Mayes said.

How to implement: Take advantage of times when it is safe for the patient to be around others, especially during therapy and survivorship. Take into account health status and the child’s social preferences. Opportunities like camp could be beneficial for patients.

  1. Supporting siblings

Because a lot of attention and focus is given to the child with cancer, it is important to evaluate the needs of their siblings.

“Sometimes siblings have to miss out on enjoyable activities, or maybe no one’s available to take them to baseball practice, and they’re no longer able to keep up with those things,” Dr. Mayes said.

How to implement: Provide parents with information on siblings’ psychosocial needs and, when it is safe, encourage parents to bring them along to the treatment center. Norton Children’s also has a SibStars program that offers support and resources to siblings.

Part 3: Helping pediatric cancer patients with the emotional effects of disease and treatment

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